Category Archives: Uncategorized

Advocacy Work

We in the Chronic Illness/Pain community need Pres. Donald Trump to sit down with us.  We need guidance today as we are losing patients to suicide due to medications being taken away or tapered way down.

The people I know via Twitter are a great group of people working hard to change how the public view us.  We are NOT drug addicts.  We take our medications as prescribed and do not abuse.  I use Twitter because it commands a lot of attention and we do know publications are hearing us as they have written about us and the opioid crisis.

The DEA cannot keep using these Nazi like tactics – storming in to doctors offices and ransacking them.  Dr. Forest Tennant is one such doctor in Covina, CA.  Please read this article.  What happened to Dr. Tennant is happening to a lot of doctors – GOOD doctors.  Not your pill mill docs.

Thankfully we have a good following of therapist, doctors  on Twitter who are on our side and doing what they can.  Thomas Klein MD actually went to Washington DC on our behalf.   These are the people we need – doctors.  Where are all the doctors?  I will tell you many have been treated terribly by the DEA.    What happened to doctor-patient privilege?   What happened to doctors knowing their patients?   My own doctor was upset over the DEA.  She told me in May of 2017 she was referring me to a pain mgmt doctor in Torrance.  That was fine with me but it wasn’t because I was a bad patient or abusing.  She knew I would be taken care of by a wonderful physician who specialized in chronic pain.   I cannot say enough about Dr. Bradley.  His bio is one that I found so impressive.  He worked with wounded soldiers.  Also worked at Walter Reed.  That’s pretty darn impressive.

This is my life now.  I cannot get down and dirty in the trenches but I can still write and make my voice be heard.   RSD is very painful and so many have no idea.  They don’t understand.   I will sit down when not too tired and write to Pres. Trump.  I can at least try.  We’ll see.

 

Deep pain today.

Got up this morning and I was in severe pain.  I was due to change my pain patch tomorrow morning.  Decided to take some break through pain medication that my pain mgmt doctor gave to me back in November 2017.  I try not to take it but sometimes I just have to.

My hands were hurting so bad and I fear my carpal tunnel is getting worse as well as Osteoarthritis in hands.   Legs were burning.  It just was not a good day today at all.  I think my body was also reacting still to what has been going on since Christopher passed away.  Day of services I was on my feet for many hours.  I was in extreme pain that day but I kept it to myself and got through the day.  It was difficult but I did it.

I think I will talk with Tom and see what he thinks about me going in to see about my carpal tunnel.  Probably time.

 

Appointment w/surgeon

I have waited for a month and a half for this appointment on April 5th.    I will find out about needle biopsy on right breast.  It has been dogging me since last May.  I have had two ultrasounds but they could NOT guarantee I did not have cancer.  They could not rule it out.  Thank Goodness I have a great Internist.  She wants the biopsy done.  I have pain in right breast where they found the mass.   I am scared to death.  Our grandmother had Breast Cancer and I was exposed to chemicals where I use to work.

Update:  My appointment with surgeon went well.   She looked at my images from mammograms and decided that the radiologist was correct.  Nothing to worry about now.  Just keep going in for my 6 month check ups and she did not feel I had cancer. So there you go.  I am happy!

 

 

 

New Doctor – Pain Mgmt

I never shared this but  back in May 2017 I walked in for my routine visit with my Internist and she announced that the DEA was sending her alerts on every medication (Opioid) she wrote.  I was shocked. She told me she would be sending me to a Pain Mgmt Specialist who she felt would be good for me.  I was not happy as it always seemed easier to go to the drs office – pick up my script once a month.

I made the appointment with Dr. Bradley.  He spent 30 mins with Tom and I and we both liked him a lot.  I read his bio before going, and was impressed.  He spent 18 years in the Army and had worked with wounded soldiers.  He knew about pain.   He ordered a MRI of my back (lumbar) as he wanted a good image of it.   He told me I was the classic case.  I had surgery at L5 S1 in 2008 after having a Discogram.    Dr. Bradley stated that after a few years you do start to have problems.  He was right.  I also had Degenerative Disc Disease which Dr. Rogers (Surgeon who did my surgery) told me I already had.  Of course I also had the painful RSD which is neurological.

We tried the epidurals but I got  violently sick- blood sugar spiked on me and I ended up in Urgent Care on IV’s for dehydration. I was a mess.  They got my sugars down before I left there.

Next time I saw Dr. Bradley we decided together to just stay on the Fentanyl as it seemed to work for me for now.  I was also given a low dose break through pain med which I have only taken a few thus far… It’s hard but I do not want to go any higher.  It tough – really tough.  I know they will help me if I really want it.   I am blessed to have a great team of doctors.  I really am.

Every month I go to see Dr. Bradley – we talk and I get my prescription.  Not a big deal.

Re-Check Mammo

It will be 6 months since my last mammo.  Am waiting for the approval for my ultrasound on right breast which they are watching.  I recently got a letter it was time to be checked again. I spoke to my Internist this week, and if it is still a “Probably Benign ” diagnosis (which means they still cannot rule out Cancer) she still wants me to see surgeon for a biopsy.

There have been three gals from the office I worked in for 16 yrs who developed Breast Cancer.  The company closed down in 1998.  It was an Oil/Petro Chemical Company that manufactured products for cars.   We were exposed to many chemicals namely Toluene and Benzene.  Tom, my husband was upset 6 months ago when they told me I had the mass and they did not do a biopsy.  They flat out told me the kind that I had – is one they worry about.

I have to be re-checked now… All these years I have been clean – no problems until 6 months ago.  I was on Estrogen for years after a Hysterectomy in 1993, and exposed to the chemicals.   I will keep this updated.

January 31, 2018  –  I am seeing a surgeon on April 5th to have consultation.  Needle biopsy and removal of mass was suggested by my Primary care doctor due to family history of Breast Cancer.  As I have stated I am not in panic mode but I do have a lot of anxiety over this.  Is it just a coincidence that a few girls I worked with got Breast cancer?  Perhaps.  Better to be safe then sorry in light of our history.  If the chemicals were part of the problem – it’s “spilled milk” and even if I could – I would not seek to sue anyone.  The owner is deceased and was a man I truly respected and liked.  I would not even go there.

 

October 4, 2017 – visit to hospital.

For a few days, my left leg was swelling up – deep red in color with blisters on shin.   I kept thinking it would go down.  My  sister-in-law pleaded with me to go in and be checked.  I finally did!

I went to the ER and the attending physician wanted to admit me but was also concerned that I might pick up a nastier infection in the hospital.   The diagnosis of my leg was Cellulitis which can be deadly and go into sepsis which I already knew.   They did an ultrasound to rule out a blood clot just in case.  It was negative.  They took a lot of blood and gave me medication for the pain.   My husband came up to the hospital later as I was more worried about leaving our animals.  Luckily he was off duty and around.

I was in the hospital for about 12 hrs.  This was my 4th bout with Cellulitis.  The first two times I got it- I was in the hospital for days on an IV drip.  Today they want you out.  I was given Keflex and Bactrim and finally finished it today.   My leg still has some redness and it is concerning.   It’s not going away fast enough for me.   I requested a home health nurse to come out and take a look at it but hasn’t happened yet.  I do not want to be in public places where people are sick as I cannot take a chance.

Being a diabetic makes this all more serious. People don’t seem to understand that but it is true.  From my knee to my ankle- my leg was so swollen it was horrible.  It was rock hard from the fluid and hurt like the dickens.  Normally when I got cellulitis it was a single red streak going up my leg but boy this time – it was red all over.   You cannot mess with this stuff.  It can be deadly and you can’t let it go as I did this time.  Very angry at myself.

10-27-17 Just an update.  Home Health from LCMH has been coming out checking my leg.  I have CVI (Chronic Venous Insufficiency)  along with Chronic Stasis Dermatitis.  We are trying to keep my leg clean and moisturized so bacteria cannot get into.  This has been by far the worse case I have had.  I am frustrated.   The Cellulitis cleared up with the medication but I am not out of the woods.   I want to get back to my old self and it’s just not happening fast.

Infection in Sinus

Had an appointment today to have some blood drawn at my doctor’s office.  I told the gal who was drawing my blood that I had planned to go over to urgent care next door.  She told me to hold off as she was going to tell Dr. D that I was in and not feeling good.  Dr. D said she would see me even though she was overloaded with patients.  I appreciated so much.

I have been not feeling good since latter part of June but like we all do, I just let it go to the wayside.  I thought I would get better.  Well I have a bad infection – fluid in my ears which I knew because they hurt like heck.  So, it’s antibiotics for the next 10 days and hopefully we will kick this stuff to the curb.  (grin)

I have the best Internist and her staff is fantastic.  Always nice towards me.  They deserve a gigantic big box of See’s or one of those “Edibles.”

Mammography

Back on June 20, 2017 I went in to have a routine mammogram.   One week later I get a call from the Women’s Imaging Center that I need to come back in for further testing.   They end up taking two views on right breast and ask me to wait.  The gal comes in about ten minutes later after talking to Radiologist and he wants an Ultrasound done.

After the ultrasound, the gal told me there are two types of Masses they see- the first one is not one they worry about too much .  The second one, which is what I have they do worry about. Just great I thought to myself.  My anxiety level went way up.   They want to see me back in 6 months and said it’s “probably” not malignant.  How would they know this if no needle biopsy was done?   So confusing… And the word probably does not sit well with Tom and I.  We are worried.

Have not had a chance to discuss this with my Internist yet.  I see her in October.

 

Neurologist appointment-January 30, 2017

I went to see Dr. Laura Jong on January 30, 2017.   She did an extensive evaluation on me.  Tom and I really liked her.   She confirmed what two of my other doctors have stated and always thought, that I do indeed have RSD.   Right now I am waiting for authorization to have an MRI done on my spine.   It has taken me years to get a real diagnosis aside from the mild Peripheral Neuropathy I have.  We have known for a long time that something was not right with my legs/feet.  Getting this diagnosis meant a lot as Dr. Jong is highly respected in her field.

I’ve been on a pain medication for years but decided to see a Pain Management doctor which I will do after I have the MRI.   People have a hard time understanding where I am coming from when I tell them that I am not feeling well.  I look fine from the outside.

I feel blessed that we have good health insurance and I do not take it for granted.  I try not to go to the doctors unless I really have to.

UPDATE:  I forgot to mention that the MRI came back with nothing significantly wrong.  Dr. Jong’s final diagnosis was RSD   Reflex Sympathetic Dystrophy (RSD) Syndrome.  Well it took years to get that diagnosis but I am glad we found out for sure what it is. 

MRA Aorta test

Have an appointment for a MRA Aorta runoff this Thursday.  Have never had one before.  I had an endoscopy back in August 2016, and my doctor found something that was a bit off.  He decided that it would be worth it to have this test just to make sure all was well.  My Gastroenterologist and Vascular doctor got together and decided this is what I needed.

Have had stomach issues and have been experiencing nausea and vomiting which I have never had issues with.  As always, I am sure there will be nothing and all will be fine.  Life is an adventure…Ha!

Update:  I did have the test and actually the test did not reveal anything out of the ordinary.   No problems – Blood flow in small veins are still a problem but all looked good with my arteries which I was thankful for.  My physician wanted me to be seen by a new Neurologist, and that appointment was made and carried out on January 30, 2017.