Fundraiser

Hi all!  I am writing this brief entry to appeal to those who are able to help me and my family make a dent in $19,000.00  worth of medical bills and that is with full Blue Cross/Blue Shield coverage.

My husband Mario is an employed Computer Analyst with the heavy weight of supporting all 8 of us, running the household, taking children back and forth to sporting activities and after school jobs.  He runs play dates and much more.  I worry about the added financial stress we are under and the pressure he feels to take care of all of us.

I will be going back to Graduate School in two weeks which will put more on my husband's plate.  I humbly ask you to consider to consider making a donation 

You can visit www.gofundme.com/helpingtracy or make a private donation via PayPal to trayb_17@yahoo.com

So far we have been able to pay recent hospital co-pays and prescription costs as well as now three larger bills!  WooHoo!  Thank you again, Donors!

Please share this message if you see fit!

Thank you!

Continuing where we left off

**pictures of my incision & scar below

Well, by now I had been home about three months.  I was alert but napping very frequently.  Reading was hard as my eyes jumped from line to line and that resulted in headaches.  I spent a great deal of time in bed.  The fatigue I experienced, and still do, is like something I have never felt before!  It is unrelenting and I must succumb to it everytime it calls.  

I had a visiting nurse, an occupational therapist and physical therapist who each came to the house.  My sister, to whom I will be forever grateful, stayed at my house for a week, organizing my appointments and care.  It seemed like someone was coming everyday!  I found it quite annoying and I remember being totally out of it and not wanting to get up.

I finally decided to seek the therapies outside of the home after about a month later.  I really didn't feel like I was getting much help with the at home therapies.  I began going to speech, occupational and physical therapy at a traumatic brain institute therapy center.  It was a helpful but scary and sobering experience.

I was there for 3 hours 3x's per week.  I was driven by my sister and parents.  I was in terrible arthritic pain which had to be managed first before work on my gait, speech and problem solving issues could be tackled.  

I met many nice people who unfortunately were in horrible circumstances, like those who are paralyzed due to different types of brain injuries.  I met one woman who fell 25 ft but wouId never walk again and she had a 13 month old at home.  I would go home mentally and physically exhausted!  I would come in and just fall into bed and sleep for hours.

The therapy did help a lot in the speech department, occupational therapy went well and I walked away from physical therapy with weakness and a limp.  I graduated from having to use a walker to being able to use a cane.  

After therapy began the real dark side of my journey.  Depression and anxiety set in.  I went to a deep, dark place from which I am barely emerging...more on that to come!  Please contribute if you can to our medical bill fundraiser www.gofundme.com/helpingtracy

Remembering your caregivers

You know, it is easy for us to forget about all of those that are taking care of us.  We are often times caught up in our own emotions pain and dealing with going to doctors appointments and all that encompasses being sick. However there are people around us were supporting us and helping to take care of us. I feel that it is important to acknowledge and remember them as they are often times taking on extra rolls besides what they already have to do and responsibilities that they already have in the home.

In my family it is been that way. My husband Mario has basically taken on the role of caring for our 6 children, getting them back-and-forth to school getting himself back and forth to work every day, driving kids to afterschool activities and on and on and on.  He has had to take on the role of driving as I cannot drive due to my seizure disorder. He has taken on the role of paying the bills in the household. I am very limited in what I can do physically. So even housecleaning chores have fallen into his lap.

Mario has attended parent-teacher conferences and any other school events that have come up with the children. He has been overworked and he's very tired.

 Often times when there is a sick person involved all of the attention focuses on that person and not the caregivers around us. I would like to acknowledge him along with my mom and dad and my sister Kelly  and her husband Tony and my best friend Sharon, along with a

host of friends and family that have shown their support whether by driving me somewhere, picking up prescriptions or even just coming by visiting or having meals delivered here to the home.

I cannot totally speak for the caregiver as I am not in that role but I think that it must be really hard for them at times as they are not often getting the support that they need in many ways. My suggestion to caregivers would be to make sure that you are reaching out for help. That you do have an outlet for your frustrations and maybe a group of other Individuals in your same situation that you can talk to.

So again, to my husband Mario and all of my family and friends I thank you for your caregiving ways, support, love and constant attention!

CHEERS TO THE CAREGIVERS OF THE WORLD!

Hospital phobia?!?

I was admitted to the hospital for a couple rounds of heavy steroids due to an EXCRUCIATING headache that was quite scary!  I spent a night there and was asked by the neurosurgeon if I wouldn't like to stay 24 hours longer to receive my last amount of steroids,  as my pain level was still about a five.  I tried to act perky and ask if I could take the steroids in pill form and go home.  She agreed and I was released. 

While there I received a CAT scan of the brain and a lumbar puncture.  The lumbar puncture was quite painful as they tried to get spinal fluid four times only being successful on the fourth time.  The first time three times the doc kept hitting bone and it was not cool!  A specialist had to perform the procedure finally.  I also experienced a seizure, uhhggg!

From the time I was wheeled into the ER I realized that I had the major jitters!  The hospital was gorgeous and the nurses were impeccable.  I was in a hotel style room but none of it kept the uneasiness from running through me.

I don't even know if this is a true type of phobia, but I have Hospital Phobia.  I realize that my experiences to date with other hospitals have been traumatizing and sub par and that is why I wanted to get the hell away from this one.   I was treated just horribly before at another hospital.  Kudos this time to Henry Ford Hospital West Bloomfield for letting me see there is a better way to administer health care!

After all, I should have stayed the extra day as I am not feeling well at all!  My head is better but my headache is still there.  My back is a mess from the lumbar punctures.  Despite being anxious about hospital settings I am glad that I went.

My advice is to follow your instinct about your health.  Don't put treatment of an ailment off like I did!  Your health and well being is too important!

#Meningioma #hospital #headache #braintumor

Up again....

I never had trouble sleeping prior to my craniotomy.  I could fall asleep sitting up! I used to get refreshing sleep; Those days are gone.  

I hate to appear so negative in many aspects in my posts, however it is important to me that I don't sugar coat what I have been going through either!

I am just really amazed at the strange way in which my brain works now.  I now get extremely sleepy in the late afternoon around 4-5 pm and will konk out until sometimes 9:00 or 10:00pm, then I am up until about 1-2 am or later,  at that time I usually have developed a migraine and need a sleeping pill to go back to sleep; Like right now...it's 4:43am!  Then I am back out until late in the morning due to the sleeping pill.

I am trying to go with the flow but this is hurting me in the healing process.  I need  some refreshing sleep!! 💤😴

The long journey of recuperation begins...

I had an absolutely horrible 1st month or two, in terms of pain.   I was plagued by eye socket pain and jaw pain that was through the roof.  I was on heavy pain medications for that pain and my RA (rheumatoid arthritis).  That mixed with my seizure meds had me totally out of it.  All I wanted to do was sleep.  I no appetite and I lost 20 pounds as food was just not on my radar.

I was absolutely in shock when I saw my head and how long the incision was and how many staples there were along with what were supposed to be dissolvable stitches.  I found out several weeks later that the stitches were infected and not dissolvable at all; Just one of the many errors made in my treatment.

Due to the fact that I had pain that the Doctor's couldn't explain, instantly I was labeled as a "problem" patient despite the fact that what I was experiencing has been documented in reputable medical studies and Neuro opthamalic literature.  Migraines are common and so is jaw pain as your jaw muscles are cut during the craniotomy.  It was the degree of pain that stumped the doctors.

I have learned that many doctors think inside of a box and if your case doesn't follow what they usually see in practice well then the patient needs a psychiatrist.  I have never been more humiliated in my life in terms of my pain issues.  I now have lost a tremendous amount of respect for doctors who think they are some kind of "GOD" because they have a degree in medicine!  Yes, Doctors are highly trained professionals (some of them are) but they don't know everything!!  Ok, enough with that issue because I feel myself getting anxious just writing about it.  Now I have Dr. phobia and that's that.  

I had my staples removed 14 days after surgery and surprisingly it wasn't that bad and only a few stables hurt a tiny bit to come out.  My entire left side of my scalp was a weird kind of numb and still is just not as much,  Everything on that side felt pulled real tight.  I never had a face lift but it feels like what I imagine a facelift might feel like.  I was never told that I would struggle opening my mouth due to the jaw muscles being cut, but that was the case. 

My gait, balance and speech were in tact until the hospital re-admittance incident I had after being home for 10 days.  I experienced the absolute worst headache to date and was rushed to the nearest hospital.  After the incident my speech began being slurred and right sided weakness developed.   I spent an additional 8 days in the hospital due to pain and MRI detected swelling.

With that behind me, I began at home physical and occupational therapy.  However, I was really exhausted.  My body just couldn't handle it and I don't think I got much out of it.  I did get up and walk around my home but I was in no shape to do much more.

I had so many follow-up doctor visits initially and that just added to my exhaustion.  Once those were out of the way I could just lay back and begin my recuperation.  I do have some tips to get you through that time.

1) Don't push yourself!

2) You may feel well enough to start doing a lot of things, DON'T do it!  Allow yourself to heal.  You have had a major surgery and or had radiation treatment!  Give yourself a break!!

3) Do not feel obligated to entertain company or return phone calls right away.  I had many visitors and calls along with tokens of love delivered.  I will be forever grateful to those who who were there and are still here for me.  However, I sent thank yous as I felt up to it and I communicated via text, FaceBook and email.  Sometimes I wrote out thank yous.  Everyone was understanding.

4) Accept help!  If someone calls offering to take out the trash, pick up your prescriptions, cook, do laundry, write out thank yous or help pay bills, etc., by all means let them assist you!!

5) Ask for help if you need it!  Family and friends may not call with an offer but that doesn't mean they don't wish to help.  Some individuals feel like they might be bothering you if they call.

6) Take things one day at a time as how you are feeling may change day to day.  For example, I did not start having seizures right away and things changed once I did and adjustments had to be made.

Overall my first two months at home were chaotic and not easy for me!  After the second month I decided to go to physical therapy, occupational and then the added speech therapy at a traumatic brain institute as advised by my neurosurgeon.  I will continue my journey in another blog...

Uhhgggg...It's Brain MRI time

It is that time of year for me to get a MRI to check for any tumor growth and to check on the aneurysm I have.  Needless to say I am nervous.  I have been procrastinating getting the script for the procedure.

Statistics are in my favor that all will be well but there is still a little evil being sitting on my shoulder whispering, "you better prepare yourself for the worst!".  Rationally I know I should cut it out but this is not a rational situation; It doesn't make sense that I or anyone else for that matter should get a damn brain tumor, cancer or any other serious disease.

You would think after being almost 2 years post-op that getting am MRI would be a piece of cake, well it's not! This dumb ass tumor has forever changed my life and I have to fight everyday not to succumb to the scariness of the whole situation and to claim my life back.

I will eventually go and get the script for the scan but Lord knows, like a two year old stomping her feet and having a fit, I don't want to!!