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!   

The hospital stay after my craniotomy

Well, I left off with me being wheeled down the hallway to surgery.  The next thing I knew I was waking up in a groggy state in a room that was the color green I had no concept of what was going on or anything else going on in the room.

Based on what I am told there were two nurses in the room along with I believe my parents and my husband and I had a wonderful friend named Anna who sat at the hospital for almost the complete 10 hours that I was in surgery but she needed to leave before I reached the recovery area so I believe those were the people there when I was waking up from anesthesia.

My sister told me that I was using rather foul language and refusing to drink Ensure and demanding potato chips which is kind of funny seeing as I had my weight-loss surgery several months before and my diet had completely changed and was not the same.  The nurses assured my sister that type of language is common and people say all kinds of things when they came out of or were waking up from anesthesia.

I asked my sister to take pictures  and my head was wrapped completely in white gauze there was a tube coming out of my scalp with blood coming through the tubing into a little pouch that was tucked into a pocket in the front of my hospital gown.  Which was collecting excess fluid I guess.

I don't remember being in any type of pain I had no concept of what time it was and I was repeatedly asking for my glasses which had been taken from me obviously during the surgery. I wanted them to see the clock.  For some reason I was very interested in what time it was. I did have several visitors after the surgery but I don't recall those visitors being there so I was filled in on that part.

You're automatically placed in the ICU or intensive care unit where you are checked on every 15 minutes literally it's all glass where people can see you at all times meaning the nursing staff or hospital staff would come in every 15 minutes.  They were checking my pupils checking all neurological things to make sure everything was going okay.  

I vaguely remember those visits. I vaguely remember having my blood pressure taken or really any other procedure that went on except for a very traumatic experience that did occur I believe on the second day that I was there. Several doctors came in as the cancer hospital I was treated at is a teaching hospital and it was time to remove the bandages from my head and instead of doing it gently they basically ripped the bandages off of my head and I remember feeling excruciating pain like I've never felt before in my life and that includes childbirth!  However I was still in such a daze that I couldn't even really process the pain or complain about it or ask for more pain medication at that time.

What is very strange to me is my very little recollection of my time in the hospital.  I don't remember speaking very much to hospital staff I do recall more of who came to visit me.  I had a visit from rehab doctors and It was recommended that I be sent  to a rehab hospital for further treatment and that if I was not sent there that my chances of a full recovery were pretty much minimal. For some reason that did not happen. My sister and other family members did tell me that I was very combative about not wanting to go to a rehab hospital.  

So instead of following the guidelines that were written out for me for discharge somehow I was just charged home with the care of a daily nurse to come and visit me to check vital signs and to check the staples that were in my head which were 45+ Staples I believe.  I was quite shocked about the number of staples and how large the incision was, which went from the peak of my hair in the front near the fore head all the way down past the ear to the bottom of the ear lobe; that was not the size incision that was discussed when I met with the neurosurgeon about my surgery.

I really did nothing at the hospital but sleep and receive visitors and even when visitors were there I was sometimes sleeping. I was sent home after three days at the hospital.  I was sent home on a medication called Decadron which is I believe a very strong steroid to control swelling of the brain I think I took that for two weeks maybe it might of been less my memory is not that great.

I vaguely remember the drive home as the sunlight was excruciatingly painful to my eyes and so my husband  leaned the seat  back  and he drove  and I had my eyes shut dozing off in the seat all the way home. I came home to a freshly made bed and a very neat and clean home as I tried to have things organized before I left.  Thanks to family and friends my sister coming by and staying with me during the week when my husband had to go back to work I was well taken care of.  The first few days at home weren't bliss as I was kind of out of it walking around in a daze.   I was inundated with love and family and friends all around me which made things a lot better however trouble began on the 10th day after being home. All was not well.... More to come in another blog entry.

Let's visit the hospital...

I remember prior to my surgery researching things incessantly; one of my double edged sword traits!  I looked up just about everything I could to help my understand this thing called a "Meningioma".  The whole thing was baffling to me.  But let me warn you too much research may end up scaring the crap out of you too.  I even went so far as to watch an actual craniotomy AFTER my surgery and I have been on a psychological bender ever since!  I don't suggest you look at it; just my opinion.

My husband and cousin, who is a cancer survivor went to my 3rd opinion neurosurgeon appointment with me.  Frankly I only remember what said just before the neurosurgeon came in and barely NOTHING during the appointnment.  We left with me staring blankly ahead.  I was scared shitless  (sorry, the best word I can think of).  But most of all, I felt alone on an island by myself; I knew NO ONE with this tumor.  I knew other types of cancer patients but that didn't help me.  I left with 2 small books on my tumor that hospital had in their library for you to keep.  That's it!  My surgery would be July 23rd and that appointment was the first week in January.

So I went home and got back to researching for a support group or something like a blog to help me through understanding just what I was embarking on.   I found two blogs that were somewhat helpful; Actually I would like to thank the bloggers for writing about their experience.  I got attached to reading one in particular but I opened the blog one morning to read the next post but it was from her mother thanking the blog readers but her daughter had died.  I was devasted and like WTHeck??

Thank GOD I found the online support group Meningioma Mamas; they are also a private group on FaceBook.  Most of the "proper" information I learned from that group and I still visit the group regularly.  I was able to actually see other tumors on cd, what some incisions looked like.  The group is amazing with support and sharing!  I highly recommend  joining as a patient and if you are a support person.

So, I am going to list here all of things I can think of that may help on your journey leading up to going to the hospital, your stay (only what occurred with MY stay) and discharge.  I will have to divide the entries up though as writing this is emotional and long.  I will write other posts on what my experience was like soon after I got home.

1) I suggest organizing yourself at home prior to surgery IF YOU CAN!; especially if you don't have a lot of hands or support or you live alone.  If you live alone maybe you can have a friend stay with you for 2-7 days.  But if not, the hospital can arrange for a nurse to visit you daily per your insurance clause.  The pre-organization plan may not be feasible if you are required to have emergency surgery, but don't fret, things will get done!!

Please make sure to explain to your children if they are old enough to know something is happening.  We had a family meeting and there was crying and hugging but I wanted my children to hear from me what the deal was and that I loved them.  I told them about who may be helping, like who would be picking them up from school.  Things that seem small to us are sometimes big deals to children.  Your child's teacher maybe should be made aware that there is a medical situation going on at home so there is open communication just in case your child has issues in class or may be nervous or scared and grades drop because of it.  Some may feel that the situation is private; follow your gut with this one.

Organize your bills by date due in a clear office container where you can see them as a reminder to pay them or pre-pay a month or two if you are able.  Make sure to write down what you've done as you may not really recollect it when you first get home.

Record your passwords and sign in names to websites ( put in a secure place) as you may be foggy and not recall them easily.

Make a list of friends and relatives with their contact info, that you can call on for help and put the list on the fridge or in a very visible place. 

Make meals in advance, divide into servings and stick reheating directions on them, then freeze.  Don't forget to label what's in the storage bag/bowl.

Stock up on groceries especially if you have a house full of kiddies like I do 

( remember we have 6 kids).

If someone is going to help with your children, like driving them to school or dropping them off just print out a blank calendar and fill it in with who is doing what on which day.  Do the same thing for your pets, like if you will have someone coming to walk the dog.

2) Realize that even with preparation things may NOT run smoothly or be perfect.  Try really hard not  to focus on that! The laundry or whatever is around the house can wait!

3) ASK FOR HELP IF YOU NEED IT!  The hospital had all kind of resources and I had social worker visit me to be sure I didn't need a nurse at home (based on my feelings and doctor's orders), which I did end up needing.   Please don't feel shy about asking.  A lot of people want to help but they are not mind readers and don't know what you need or want without being asked.  They are also nervous sometimes because they are kind of freaked out and don't know what to say.

4) Purchase thank you cards with stamps and leave them on your dresser.  Maybe have your significant other, spouse or friend write them out and drop them in the mail and so what if they are three months late or if this doesn't get done!  Only do what you can!  Your recovery trumps thank you cards!

5) Try to think of things that will make you comfy at home and have them ready.  Like a special blanket, your favorite tea/coffee. Buying new Books, movies, music and magazines, I would hold off on as you may not be up to reading or noise may be bothersome but either way go with your gut on this one.

6) Program your phone at home  and cell with important numbers on speed dial. Write a sticky by the phone telling you who is programmed to what speed dial.

7) Pack your hospital bag lightly.  This is a bit difficult to advise on as some are more alert after surgery and some just want to lay there.  My post surgery experience was not great.  I was not interested in reading, listening to anything  or getting on the internet, but I did enjoy visitors.  I would put yor iphone/cell phone, charger, list of phone numbers, robe but nothing fancy, I really just needed one because I was freezing. Travel toothpaste, travel toothbrush, a mini tube of face wash, mini tube of lotion Chapstick and that's it.  Trust me, you will not need much at all and if you forget something ask your nurse or someone from home to bring it there.  Hospital stays vary but I was there for 4 days and due to unexpected occurrences it was recommended that I be discharged to a rehabilitation hospital ( I will tell you about this later).

8) Dress lightly in loose fitting clothes.

9) If you have a question ask it!  

10) You will be given instructions for check-in.

11) I was checked in and sat waiting with my husband to be called back to be prepped.  My parents came later tan us but before I was scheduled to be called back to be prepped.  I was so nervous that I thought I was going to faint.  Up until then I had been very "put together".  Well the cancer hospital I had surgery at required you kiss and say good by to loved ones in the triage area. I saw this nowhere in the pre-printed materials.  That info was posted when I checked in; ridiculous!!! At first I just did what they told me, but then I demanded I be able to see my husband and parents before being wheeled away.  ASK OR DEMAND IF YOU HAVE TO IN ORDER TO GET WHAT YOU NEED before being wheeled off.  However try to be nice to your nurses as they take care of you 24/7 and have a very taxing job!!  I value their care!

12) I was hooked up to all kinds of monitors, an I.V.,  doctors I didn't even know came to confirm medical info and ask questions for anesthesia safety.  To me it was a whirlwind of chaos and I am a control freak so I definitely was boo hoo crying.  I had these white things placed on my head and I had to have an MRI right before surgery.  That MRI helped map out the tumor but it wasn't perfectly accurate at all!

13) what was supposed to be a 4 hour surgery turned into a nearly 10 hour surgery!

13) I kissed my husband and parents goodbye and I was whisked down the hall to a surgery that surgery has changed my life forever....

The saga will continue in my next entry...

Sleep, oh lovely sleep

I was never one who had trouble sleeping.  Trust me, I used to get my 8 hours in!  I am mega grouchy when I am tired!  I should have guessed I had medical issues when I began waking up several times per night with some kind of ache or pain.

Like tonight, I am up in pain but I have found some fun things about being up at night! 1), it's quiet; thank you Jesus! 2) I get to catch up on my DVR'ed TV shows; I am literally addicted to taping stuff and not watching half of it, LOL and 3) I can roam around my house without hearing "MOOOOMMM!

The night time can be the right time to be with one you love and that happens to include myself.  Toodles, off to watch the Little Couple on what else?; The DVR!😉

Well at least I am moving more

Ultimately I know that moving my body is the best way to re-gain my health but some days I just don't want to and other days I barely can, like today.  I went to an Avon meeting last night and I really did push myself to attend.  I have only been to one meeting before and I knew I was missing out on some good information to help run my business; I'll cover how I do that in another post; I am just too out of it to blog about it now.

Anyway, attending the meeting was kind of comical in a way as I was bumping into everything, including people and displays.  So much so I felt compelled to tell people I barely knew that I was ill just so they didn't think I was drunk, LOL.  

I took my anti anxiety medicine and my scheduled pain medicine before I left home so I was a hot mess!  You may ask why I did that, well without my medication my butt would have been on fire because I barely have any cartilage or bone there and since I lost weight there sure as he'll isn't 100 pounds of padding to sit on anymore!  My anxiety medicine, well that's self explanatory.

This morning I am showing you what my lovely ankles look like from an arthritis flare and this is mild on the pain meter.  They are hot, red and swollen along with throbbing.  This is one of the days I am wondering if all this hard work I am doing to get better is worth it.  Do my ankles look better?; um not to me.  Let's not even talk about my butt and having to lean to one side because sitting flat feels like a steel rod is being rammed into the side of my butt!

This morning I am not in a positive mood at all!; Can you tell?? Oh & the highs and lows of being ill can kiss my ass this morning.  I don't care if I move it, as "they" say!  I am going back to freaking bed!