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!!

What's with all the health problems?

I have spent many a morning staring at the ceiling wondering how did I get here, in terms of my medical conditions.  I have come up with several ideas but yet some how I had not been able to make a huge difference in my state of being.

I am 42 with the following health concerns:  a Meningioma (resected), diabetes (diet controlled), degenerative disc disease, two ruptured discs in the lower c-spine, g-6PD deficiency, chronic anemia, Rheumatoid Arthritis, Osteoarthritis , a tiny brain aneurysm, seizure disorder, high blood pressure, right sided weakness with an abnormal gait, jaw pain and eye socket pain....OH MY GOODNESS!  Obviously I have got big problems which cause little problems.  Some of what I listed are symptoms of these conditions and are not stand alone illnesses but never the less, they are there.  What is going on?

Well, first off some of the illnesses I have are hereditary and I am not surprised I developed them such as the high blood pressure and diabetes.  I also should note that my weight was way out of control.  At my heaviest I weighed 322lbs!  Of course, that contributed to the development of diabetes and high blood pressure along with the development of inflammation.

However, I am still baffled at the laundry list of medically confirmed problems; ther has to be more going on and I am really starting to believe that stress and other emotional issues are contributing to my medical problems.  I believe that if you are not well emotionally and mentally then if left unchecked you will begin to develop a body breakdown physically.

Science has shown that the body desires homeostasis and will do whatever it takes to get it.  Hence the negative symptoms when the body is unhealthy.  Now then one will require medical intervention to  re-create homeostasis; or do we?  Hmmm, this is where I get stuck.  That medical intervention requires many prescriptions to try to balance my system and there still isn't balance.  I believe that the balance I now need is mental balance.

I think people get nervousness when one starts talking about the mind, mental stability or anything that they feel may make those around them suspect "ohhh, he/she has mental problems, omg!"  Well, the mind is a very powerful thing and is proven to be inter-connected with the physical body.

That's it!  After all those days staring at the ceiling I have decided I need to see a psychiatrist for my anxiety issues and a therapist to gain balance mentally.  I have been attending a wellness group where I have learned about positivity, awareness of breathing style and had other breakthroughs that have helped with relieving pain and anxiety.  I have only seen what I believe to be the beginning of improvement in the symptoms I experience !  I have to remember, mind over matter!!

It is hard not to feel sorry for myself sometimes...

I currently attend a wellness group class, am a part of a great online community called Meningioma Mommas and reach out when I need support.  However, lately I have been finding myself shrinking away from positivity and feeling sorry for myself.

These feelings are tied up with other emotional baggage as I am one of those people who feels like a lot of the time a black cloud is following me and no matter what I do I can't get away from it!  

I mean, who takes charge of their health, loses over 150lbs, begins exercising only to find out they aren't healthy at all?  Some days it feels like a cruel joke.  The sad thing is I know my illnesses are not jokes!

Even with that knowledge I want to be one of those carefree people who can just look at the bright side of things.  I worry about things I have no control over like a lot of others do in life.  I therefore made a commitment to do better and there has been a good improvement in my overall attitude.

But there are those dark days where I cry and cry, why me?  This moment is one of those times...😢

The first few months at home...

Well,  I finally made it home after I believe it was three to four days in the hospital.  My mind is still a bit fuzzy about the details of coming home as I mentioned earlier. I was brought home by my husband I had to lean back in the seat in the car, along with keeping my eyes shut as the sunlight was excruciatingly painful to my eyes and gave made my headache worse.  Upon coming home my sister was here to help out with many things. Which I will be forever grateful for.  My parents were also right there helping with the children and preparing meals and holding my hand; showering me with love and concern.  I had friends helping as well as sending cards, flowers, food and anything that would be helpful here to the house and I am grateful for that also!  Without their help I don't know how we would've made it through the first few days and weeks. My sister came and stayed during the day with me after the first two weeks.  My husband stayed home with me the first two weeks. Making sure that I was taking my medication properly as one is usually on a very strong drug to keep swelling down in the brain and I was also put on Keppra and Depakote which are medications for to control seizures.

As I've mentioned before I remember being very, very foggy. Kind of feeling like a space cadet, not really knowing what was going on, I wanted to just be in my bed resting and sleeping. I did watch some TV and for some reason was obsessed with wanting to pick up the phone and try to call people even though I was completely out of it. I believe my sister had to hide my phone and take it away from me LOL.

Reading was next to impossible as my eyesight was very fuzzy, my vision was not clear. I could not have the light on in my bedroom as that caused pain behind my left eye.  My husband did raise the shades in the morning to let sunlight in and so did my sister during the day. But for the most part I really wanted it dim or dark in my room for the first few weeks. I spent most of my time sleeping many people did call to check on me and did come by to visit but for the most part I was to myself and in the bed. Slowly but surely I started to get up and move around but I needed assistance to the bathroom and assistance to take a shower as I was not steady on my feet.

At the time I wasn't really able to be surprised that I wasn't more alert but when I look back on things I am surprised that I was in that condition as all the research I had done prior to my surgery did not indicate that I would be that way. Most of the people that I had seen or read up on after surgery were up talking and alert and that was not me in the least bit. 10 days after being home from surgery I developed an excruciating headache. And I had to be rushed to the nearest local hospital, which it's important to know was NOT the hospital where my surgery was originally done.  This started a crazy chain of events that will haunt me for the rest of my life.

When I arrived at the local hospital my sister and my best friend explained to the medical professionals what the issue was as I was in so much pain I was unable to really articulate what was wrong with me other than the fact that I was in excruciating pain in my head behind my eyes where the craniotomy had taken place.  To my surprise no neurology team rushed down to see me or to check on me EVER!  

What the hospital decided to do was to try to contact my neurosurgeon at the hospital where my surgery was performed and let me lay there for over several hours.  Big mistake as I am convinced to this day that I was in the middle of having a TIA or a mini stroke. I was moved to an observation area after several hours of waiting in the emergency room with nothing but pain medication being pumped into my arm. No one checked my reflexes.  No one checked to see if my pupils were dilated nothing absolutely nothing!

To this day I am very, very angry and am still considering legal action against both hospitals. One for the fact that my neurosurgeon never responded according to the hospital I was at; never responded to the repeated pages and calls to him regarding my case.  Number two that I was not transferred to my original hospital by ambulance if the hospital I was in was refusing to treat me.  For whatever reason, which I believe is partly due to the ego on the part of the doctor who heads the neurology team at that hospital, they wouldn't touch me with a ten foot pole!   

It is important to note that I sought this hospital's head neurosurgeon's opinion on my case first but decided not to use him as my surgeon.  While I was in the hospital, the local hospital, this neurosurgeon was paged over and over again to come and examine me. I overheard him talking to the nurses via walkie-talkie that he was not sending an attending down and he would not be down either to examine me either as he doesn't tend to other surgeon's work.  That was not meant for my ears.  The nurse's face was beet red and she quickly tried to turn down the volume on her communication system but it was too late I already heard what was said. 

I was kept in their observation area of the hospital, not admitted for three days only for them to basically get to the point of I just had a pain issue or was crazy or faking, despite the fact that I did have an episode of unintelligible speech in front of two visitors who witnessed it and the fact that I was talking unintelligibly for several minutes.  I followed that with not knowing what was going on or being able to answer simple questions.  I was rushed to have a CAT scan and an MRI which they claim showed no stroke. To this day there is no explanation for why after that episode I was then was unable to speak clearly and I also was not walking properly and  my gait to this day is still effected.  I walk with a cane.

After being in the local hospital for several days and receiving no treatment it was decided by myself and my family that I would just come home.  I was terrified and did not know what to do and I felt completely abandoned by the medical community. It was then that my husband demanded to speak to my neurosurgeon at the original surgery hospital and finally got a hold of him and I was checked back into Karmanos Hospital with a private room and was in there for another five days with them trying to determine what the source of this excruciating pain was in my head. The neurology team did not seem to be able to find out what the problem was exactly; if I was having some type of pain syndrome or whether I did have a stroke or not.  They even alluded to the fact to my sister and brother-in-law that I was a bit eccentric and maybe possibly there was nothing wrong with me at all. As I said I'm very, very angry about how I was treated and the physical evidence is there that something did happen and something did occur. But despite the fact of whether or not I had a TIA or mini stroke I was not treated properly as I was never seen by neurological team at the local hospital and I was never transferred to my original hospital by ambulance.  My husband actually drove me to be checked back into the original hospital where I had my surgery done and at that time I still had staples in my head & I was not even near any type of recovery. I came home after 4 to 5 days.   

After 4 to 5 days in the original operating hospital I was sent home with a pain regimen to try to keep things under control pain wise and to control some swelling that was still in the brain.  I was told to see a Neuro ophthalmologist regarding the pain behind my eye and was also referred to the pain clinic for treatment and told to see my primary care physician for follow-up. All those things were done and when my primary care physician found out what had occurred (which she should have already been notified by both hospitals that I was there) and heard all the details of my experience she was appalled along with the partners in her office.  It was very clear by the reaction of my primary care doctor and her partners that they were in agreement that something was not right and the way that I was treated was unprofessional and dangerous all-in-one.

We decided to start recording my speech and the way that I was walking. When I returned home my gait was so bad that I was literally bouncing up and down when I walked like a bouncy ball and my speech was very, very slurred it sounded as if I was drunk.  I was referred to a traumatic brain injury rehab center, where I should've been in the first place.  I mentioned in another blog that it was recommended that I be released to a rehab hospital which I was not and released to home. I spent three months going to brain rehab three times per week for speech, occupational and physical therapy.  

Therapy was very difficult!  I was very weak and I was exhausted but I was also eager to go.  I was eager to get confirmation that there really was something wrong with my speech, there really was something wrong with the way that I walked and that I wasn't crazy!  I was being treated by some of the doctors that I was seeing like I was looney and should note that does NOT include my primary care physician as I love her to pieces. If it were not for her I wouldn't even be where I am today.

In speech therapy I was diagnosed with Broca's aphasia and telegraphic speech both issues that can come up when you have brain surgery which can cause slurred speech, can cause memory issues with word retrieval problems and can cause speech distortion in general.  I had never been so happy in my life to get a diagnosis! No one wants to be ill, but at the same time when you are ill you do want to be validated in that illness and not ignored and treated as if you are crazy.  

 In physical therapy it was determined that I was suffering from definite right-sided weakness with an abnormal gate so I had to do exercises to try and strengthen the right side of my body.  The left side of my brain was operated on and as we know the opposite sides of the brain control opposite sides of the body so having being operated on the left side that controls my right side which was weak. Exercises were created for me.  I began physical therapy walking with a walker as I needed extra support. I then progressed to being able to use a cane I was trained to walk up and down stairs with the cane and how to navigate around using the cane to support myself.  

Occupational therapy was very interesting as I really didn't think that I needed that but I did.  They were giving me exercises such as cooking; one day I had to cook a full meal another day I had to go to the store and follow  a recipe list and grocery shop, find all the items on the list and it was exhausting and a lot more confusing than I thought. I did not like being in big wide-open spaces such as the grocery store it made me very nervous. 

So, all of the aforementioned problems were worked on in therapy and I was finally released after three months of three day a week 3 hour sessions. I was also referred to reading therapy as I did have some vision loss and still do have some vision loss on the left side which effects my peripheral vision.

Now began my new life. Little did I know that I was going to be on a journey of a lifetime. A scary, lonely journey. I must say that I was surrounded with and still am with tons of support, friendship, love and care from my family and friends and I am very, very thankful for that!  However there were and are parts of this journey that unfortunately cannot include family members and friends.  I have to walk with GOD and listen!