Do YOU know what you want to be when you grow up?

When you were in High School did you know what you wanted to be when you grew up? Are you one of those people that still don’t? Did you just flounder and fall into a job? Most people did. Most people don’t have enough drive or determination or forethought to have decided what they want to be at age 17 or 18.

That brings me to todays discussion.

For the Love of God people. PLEASE,PLEASE,PLEASE stop asking graduates what they plan to DO with the rest of their lives.

Let  me tell you why.

You remember being in high school and the expectations that every one had at the end. Your whole life is in front of you and the end of high school was THE time to decide what you were doing with it. It was stressful right? Sometimes too much. I have seen more than one person breakdown because of the stress.

I need to suggest that we find another way to ask what is next. Maybe just that. What’s next? Or just not ask.

Why change? We have asking the same age old questions of kids since it was common place to do so.

Here’s why. Not everyone can or will be planning the rest of their lives. You may know what I’m talking about.

We’ve spent the last four years fighting FOR Chewy’s life. At one point he almost didn’t make it. So, asking him what he’s going to DO with it is moot. Right now we celebrate the now. We can’t say what the future will bring.

Due to his being chronically ill, making future plans is extremely difficult. We have already had a year of college. The first semester was fine but on the heels of a re-up on his meds. The second we struggled with. If it wasn’t for an understanding professor with a lenient absence policy, we would not have made it through the second. So more schooling will be tough. But we have put up so much of a fight already, it won’t matter. It’s what we do.

A job on the other hand is more of  a struggle. Hard to get the future employer to understand that your Chronically ill and capable.

We walk a fine line everyday. We take it one day at a time. So please, the next time that you are talking to a person that is graduating, consider not what they are going to do. But what they have done. What they have gone through.

Be like we are. Just celebrate the now. Welcome them the their future. Be it one of more education, or straight into a job.

We will only celebrate the now and see what the future brings. We have been through some bad and are still  ready to fight. But we will fight. In the meantime, we celebrate today. We celebrate everyday.

Please, consider next time that you are talking to a recent or upcoming Graduate, to wish them just a happy celebration of the day.

We do not know what our future holds, but we are happy to celebrate it and life with you!

 

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Hospital Mom Syndrome

I had meant to keep you more apprised of our progress as we went through our treatment. But, good intentions fall by the wayside when you’re in”. Your kids attention and focus requires a bit more of yours.

Day One:

Day one was our new day two this time. We usually have issues, big ones, with the migraines making a violent appearance on Day two.. but this time, it Showed up on Day one. We went into “shutdown mode.” Shutdown mode is when Chewy tries to beat the migraine by going to sleep before it take him out in a more violent, destructive way. He literally shuts down. Hard to do on the first inpatient day in the hospital. Everyone comes and goes, monitoring, checking in, asking questions or telling you the “plan”.

We also had more visitors than normal, because the in room cabinet that locks for your belongings was malfunctioning. That required 4 calls to security to come address.. they called for a work order to repair the lock.

Day Two:

Being that we had our typical Day two struggles on Day one. We laid in wait to see if they would show up any way. It was nice to be surprised that they did not.

The hospital, however, had plenty for us to do that day. Buster Posey from the San Francisco Giants was visiting the kids for a Q&A, signing autographs and just hanging out. The super hero window washers were cleaning windows inside and out of the hospital.

Thor visited our room. He did have to put his hammer down to was the window.

The cabinet still didn’t get fixed. Then due to a leak in a pipe in the building, the entire water supply had to be turned off. For 5 HOURS! It all went very smoothly. That I could tell. They had precautions in place. Toilets covered in bags, sterile bottled water. The shutdown was from 11-4 in the morning. Just inconvenient when you have to share bathrooms.

Day Three

We continued to NAG about the lack of the cabinet being fixed. Every time we wanted to leave the room, we had to carry everything with us. Considering that he is hooked up to an IV, and I had been sick for two weeks before his admission requiring 2 IV’s myself, carrying everything was exhausting. Add no sleep in the hospital setting. And you have continuation of not feeling well on top of exhaustion.

But, our favorite Bakery, Neighbor Bakehouse, was now open down the street. Open from Wednesday to Sunday, they became the main focus of our meals during our stay. We had prepared for our stay by pre-ordering breakfast through them. It was lovely. There was a bit of a  mix-up on the first day with the order.. But the owner was fabulous and walked it to the Hospital later. With extras. He helped make our stay so much better. Each day we started our day out with a bright smile and a treat from them.

The work-order eventually came through for the cabinet. But guess what? Once I put a code in you could never change it. So fixed? NO! The next person will have the same problem. Luckily I just memorized the override codes that security was using to get us in the cabinet. Now I can get in to it anyway and won’t have to wait for security or a work-order next time.

The entertainment for the day was the San Francisco Symphony’s Latin Quartet came by to provide some music education for the kids.Since Chewy is big into Music stuff, we went. We got Kazoos!! This became our new form of entertainment. I bet you didn’t know that I can rock a mean techno kazoo! Me neither :).

This was also when I noticed it. I had seen it before..But this time I could recognize the look. The blatant stigma of the “hospital mom” syndrome.

I had been walking down the hallway coming back from the coffee counter.. We all live there during the inpatient.. doesn’t matter what time. Luckily the Hospital has also supplied Kuerigs in the Family room. Just pack your own Pods. But, walking back I passed another mom. Not one that may have been there for herself, or having a test for her kid, but THERE. Living there. I recognized the appearance. The overall look you take on as a “hospital mom.”

I call us “Frequent Fliers.” Because we are there a lot. We usually know when we are going to be put inpatient. We can prepare a little bit. But for some reason we still eventually take on the same look.

Hospital Mom Syndrome Symptoms:                                  TiredGirl

1: Bags under the eyes from lack of sleep

2: Cup of coffee in each hand

3: Perpetual sweater or sweatshirt because you’re freezing regardless of the temperature. The “blanket” you were given, to sleep with, last night was actually just a sheet.

4: Comfortable Pants. You no longer care what you look like. You have been sitting staring at those same four walls for so long that you just want to be comfortable. Heck, you may even be wearing the same clothes for three or four days. Let’s hope you have or remembered to bring deodorant.

5: Crying in the hallways like no one is watching or can hear. This maybe once, a few times, or the whole stay.. but it happens. It’s okay. We have all been there. More than we care to admit.

6: Slippers or Uggs because let’s face it, if you no longer care what pants you’re wearing, do shoes matter?

7: Hair in a ponytail. Again most likely hanging off the side of your head. Because not only have you stopped looking in a mirror, you don’t have the time or energy to look for your hairbrush. Finger comb that bad boy back in and call it good enough. All the hair sticking out all over all ready gives you the appearance of a person escaped from the psych ward.. the slippers and crazy hair.. you blend right in Smile and own it.

8: Slow walk. This is something I have seen, and I have done. But can you really describe it? You have grabbed that elixir of life (coffee) after three nights of less than 2 hours of sleep and your just trying to make sense of the jargon that the doctors are spouting at you in Medical speak instead of human speak.. your mental processes are down to zippo.. you’re mentally and physically exhausted.. thus the slow half dragging step as you force yourself to continue. You swallow the elixir and brace yourself for the onslaught of yet another day. Nodding to the other Hospital Moms that you can recognize from the same appearance and walk as they too, head to get coffee and get ready to face yet another day. You’re in the calm before the storm and need just another second or two before you press that elevator button to resume your day. It’s the slow to get back to it, but know you have to- if you can just garner the energy, step.

9: It doesn’t matter if you have showered you still manage to look like you haven’t.

10: Hand in the pocket. Hiding the ID that means you are authorized to be there. Yet not wanting anyone to know that you are when you are off the floor. Maybe, just Maybe you look okay enough to blend in. If the other “hospital Moms” don’t recognize the symptoms as you walk by nodding in sisterhood.

Have you had a case of Hospital Mom Syndrome?

 

 

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Don’t tell anyone, but I tattled

As I mentioned in my last post, Chewy (my son and CVS’r) has not been doing well. The inpatient has been scheduled. But, we have to get there. That is a struggle.

Chewy has been taking his maximum amount of meds a day. Still trying to maintain school and college classes. He’s behind in school which is stressful and there was a deadline that added more pressure and stress that incurred more issues for our already struggling CVS’r.

The college class is an energy drain. When you have Cyclic Vomiting Syndrome, you most likely already have energy issues. But, we were encouraged to work on rebuilding the muscle that Chewy lost a while back when he was very, very ill and his body used the muscle to survive.

So we did that.

But, I will admit that we chose the wrong time.

See, we should have done the muscle rebuilding closer to the time that he has been in for the DHE treatment.

Having done the class on the tail-end of the time that the medication is effective, he is struggling. Big Time. It has been more challenging than normal when we are ending the DHE. His stomach pain is much higher. His energy is way lower. Nausea has been more than 4x what it normally is. Or what he normally shares with me. Maybe because I told him he needs to take the meds. There isn’t a reason to stock pile them. If he needs them.. take them. So it could be that he is taking advantage of the meds.

That brings me to the tattling part.

See, when he started the class the teacher asked each student to provide information about themselves including medical issues that could affect them during class.

Chewy opted to NOT disclose his condition.

I allowed it.

Here’s why: The teacher is a chronic illness sufferer also. I hoped that Chewy would see that although you are ill or chronic, you can still A) have a job B) function in society with out too many negative opinions C) be a positive role model about your condition. I hoped that having a positive chronically ill role model, he would be able to corroborate about it. But, I also knew that he wanted to be “normal”.

As the class has progressed, and the severity of Chewy’s symptoms have increased in frequency and severity, it became apparent that the teacher needed to be told what was going on.

Chewy had missed three classes. With the inpatient adding another 2 classes to the absence list, he needed to be told something.

Chewy had sent the email telling him about the three and warning him about the two upcoming. But with little to no  explanation.

Being the interfering/helicopter mom that I really try not to be… :).. I felt I needed to contact the teacher and let him know what was up. I had wanted to in the beginning of the class, I even had the entire letter typed up still in my document history.. But Never sent it. I had to respect Chewy’s wishes to want to be “normal.”

But things changed.

We are a few weeks out of the end of the college semester. One of which he needs to be hospitalized for.

So I sent the letter. I TATTLED.

With the “my kid is still a minor” so I can interfere mentality..I sent an email with the subject line Interfering /helicopter mom:).

I explained why I had let him with hold the information, and what was happening. We did take the fitness class as recommended by his doctor. But really should have let the teacher know that he would struggle. But, as this was really Chewy’s opportunity to reemerge from isolation. I did indeed feel it was best for him to make the call. I did not agree with him with holding the information now that he was struggling. But he was doing what he was comfortable with. And so was I.

Being that he is Chronically ill. He completely understood and now knew why he wasn’t connecting with Chewy. He felt like he had been holding something back. He was happy that I had given him the information.

I wasn’t. I felt guilty. I was worried that the teacher would do what he said he wouldn’t and say something to Chewy.

But, it has been a bit. So far so good.

But, I still feel guilty. I feel Like I did what was best. It will truly help the teacher understand. Chewy isn’t hiding behind his invisible illness. He’s fighting it. Fighting to be “normal”.

I’ve told the family that, that is the new curse word in the my house. “Normal.” I have never been, nor never claimed to be “Normal.” I don’t understand why people strive to be. Embrace who and what you are. It is YOUR normal.

 

Posted in chronic illness, CVS, Cyclic Vomiting Syndrome, DHE, health, hospital, invisible illness, Uncategorized | Tagged , , , , , , , , , | 2 Comments

Let it Go

Did you just sing the Frozen song?

I did and I have had to, several time this week. Mainly to keep up my spirits. That is super hard to do when your enthusiasm is tanking. Big time. I have to remind myself that there are going to be things that I need to Let Go.

It’s hard.. REALLY Hard.

It started with talk of putting Chewy back inpatient in the hospital. I shouldn’t say talk. It wasn’t talk. It was scheduling. Once we schedule, for the inpatient, I go into planning mode. I’m always in planning mode.  (insert eye roll here)

I know that being inpatient is exceedingly hard on Chewy. But, for some reason my brain engages and I go into “planning mode” and can’t stop asking questions and making comments about planning. It is really to make it easier for while we are there.. then changes when we are there anyway. SO does the planning really matter? Does it help? You can’t be comfortable in the hospital. No amount of planning is going to make a miserable week of migraine aggravating, vein stabbing misery tolerable.

So why can’t I keep my mouth closed and let the guy have time between now and then to not think about it?

I need to lighten up. We are pros at this. Four years of hospital living has taught us plenty. I wrote up a blog post about what we take with us.

I need to plan silently in my head and in the background.. or really… LET IT GOOOOOOOO.

In the end, it’s what I had to branch out and do a lot of this week.

We had another prom invitation from the hospital. He went to one a few years ago. It was nice. He knew kids back then. Now he’s more isolated and you can tell. It shows in his spirit.

It was one more thing we LET GO this week. Not with out a little bit of a fight. We tried to give the opportunity to another kid that lost out on their prom, but that would have forced Chewy on a blind date. The Hospital would not allow us to donate it to someone else. Chewy would have to bring them as a friend.

So away it went. The RSVP to decline to attend.

One more opportunity that my CVS’r would not have. One more thing that has been taken away from him because of this condition.

Let me explain that. You may see it as us declining.. which we did.

But, who do you go to a hospital prom with? You have been isolated now for more than three years. Your “friends” are getting further and further away, and don’t even know when you go in the hospital.

Chewy was forced out of high school, so there very few opportunities for him to interact with peers. We tried College as an alternative to get him to interact with kids his age. But, so far, that has only led to one person that made things awkward for him to go. 🙂

So as we go through the remainder of his High school “career”, I watch as his “friends” are too busy to spend time with him doing the things that regular high school kids do. Knowing the whole time that I will have to add to my LET IT GO list.

His high school prom.. Is seven hours away. LET IT GO.. he doesn’t have anyone to go with anyway.

We already tried to fight with the school to let him back in so he could graduate with his friends.. that didn’t happen.. LET IT GO

His “friends” are too busy to go to grad night with him.. LET IT GO

I need to let go of a lot.

But, no matter how much or how frustrated I am… I imagine how upsetting it must be for him. Imagine being a senior in high school and everyone is too busy for you. People that you have been “friends” with since kindergarten. I knew that they would grow apart. I just figured it would be when they went away to college. Not because my kid got sick.

That I can’t let go.

I try to be the one that sticks around when the going get rough. Or at least I tell you to call me. I’m there. I ask if you need anything or help. I ask about you, often.

Today, and throughout the week, I have felt that my kid is being punished for something beyond his control. I can NOT LET THAT GO.

My kid and even his sister have missed out on so much because of this Monster Called Cyclic Vomiting Syndrome, and I can’t LET IT GO.

 

 

 

Posted in chronic illness, Coping, CVS, Cyclic Vomiting Syndrome, health, hospital, invisible illness, MIgraines, Rant, Vomiting | Tagged , , , , , , , , | Leave a comment

Telemedicine

You may remember me mentioning the opportunity for us to have a telemedicine visit, here. We have enacted this regimen. Can I tell you that it was beautiful!

Our usual rigmarole for getting and having an appointment goes like this.

Email the office alerting the Doctor that we are coming down off of our DHE infusion and starting to struggle.

Wait a few days for the response of, Will have staff call for an appointment.

Wait a few days for call or call and leave voicemail and wait for response.

Schedule for first available appointment which are only on Mondays. So expect that to be about a month out.

Wait a month for said appointment.

Drive 2-4 hours depending on the time of day appointment was scheduled for have 15 minute appointment at which the Doctor says, “Yep, it looks like it’s time to go back in the hospital”. “Let’s get that scheduled.”

Leave appointment with number to call to schedule inpatient.

Drive 2-7 hours home again depending on traffic and time of day.

Attempt to get scheduled inpatient date for the next week. It take almost two weeks for authorization for inpatient.

As you can tell it is a process. Of Waiting. That is usually why I say that we have started the process for inpatient.

So now, for the versus Telemedicine visit.

I literally called the office, and emailed since the number I had was for the wrong person, on Tuesday last week. Told them that we were going to try to set up the telemedicine visit.

I was called back by the coordinator same day, appointment set for that Friday for the test run before we could schedule an appointment.

Friday’s test run went fine with just a couple technical hiccups.

With a successful test run. We could have an appointment set.

Only a week after my initial call! part of me realizes that this is a newer program.. and it could be a fluke with the scheduling.. But WOW!!

After the appointment is completed.. We are called to schedule the inpatient. We already have our inpatient date. We just have to wait for the authorization.

A week people.. What used to hold up our inpatient while Chewy was vomiting for 7 weeks was all this Hub Bub..Driving him for hours puking his guts up for an appointment to say.. okay put him in.. Now we just did this all over the phone and internet via Telemedicine!!

I will tell you that this isn’t all there is to it. You should know that because of Cyclic Vomiting Syndrome.. and most people with migraines will tell you that you chart.. chart everything. Probably too much. But those charts come in wicked handy for telemedicine visits. We use them at regular visits..too. But it’s what they go over anyway.We sent them over ahead of time.

Our first telemedicine visit was a very successful adventure. Time to start planning the next. I guess that means referring to the what to pack for the hospital list in this post.

Posted in chronic illness, CVS, Cyclic Vomiting Syndrome, DHE, invisible illness, MIgraines, Uncategorized, Vomiting | Tagged , , , , , , , , , , , | Leave a comment

What has been consuming my time?

As Chewy is on day two of abdominal pain (Abdominal Migraine) with Nausea.. that later today morphed into a migraine.. the stress came in like a tsunami crashing into a foreign shore. We all knew it was out there. That the inevitable would happen. But, can you ever be adequately prepared for it?

No. Not a lick. So as we go into FULL FREAK OUT mode.. I will post what I have been working on here. It is my first attempt at video making. But ,It gets my point across. Which is what I was hoping for.

I was inspired to send in a submission for this Short film Competition regarding Migraines. However, I ended up thinking that since it was also to affect their scientific team, to push the Cyclic Vomiting Information Envelope.

Here is My Submission. Let me know what you think.

Posted in American Migraine Foundation, AMF, chronic illness, CVS, Cyclic Vomiting Syndrome, IV Infusion, MIgraines, Uncategorized | Tagged , , , , , , , , , , | 1 Comment

Slow Descent

I have talked a lot about the wonders that DHE has done in helping us manage and essentially control My son’s CVS or Cyclic Vomiting Syndrome. What I haven’t delved into is the complexity of managing the in between treatments of the DHE infusions.

Here is what is spurning this.

As I type this, Chewy (my son) is on day two of sporadic nausea. Today was all out mouth flooding watery mouthed nausea. The feeling that you get right before you vomit. Your mouth fills with saliva and you can’t stop what comes next. That was what Chewy dealt with most of the day today. Combined with upper abdominal discomfort. He is not willing to call it pain. And he was running heated. Not feverish- warm. Spring has more than sprung here and we are in the low 70’s already. That is too warm for Chewy’s comfort. One of the triggers we have noticed for him is heat. Not good when we can get into the triple digits frequently.

I have yet to say that the heat has lead to the onset of him feeling increases in his symptoms. As it has been warmer than this and he has been fine. His migraine pattern is starting to increase in frequency and severity, yet not enough to warrant calling the doctors yet. Unless he starts an episode. Which I am loathe to say I am worried about.

He has also been participating in a fitness program that will test the end of this DHE treatment. Muscle development and growth was affected by the length of time he went without nutrition a few years ago during his worst episode most likely complicated by coalescence and further complicated by his stomach then “learning” malrotation. Because his muscle growth and development were affected, he has had a hard time with exhaustion and stamina. As the DHE treatments enabled longer time periods of “normalcy” he wanted to try to work on his muscle ability. However, we did chose to do so at the tail end of the DHE efficacy.

DHE is said to have peak efficiency for about 6 months. For us, it takes about a month to reach it’s peak once you get the infusion. It is super good for about 4 months and then you begin the slow descent back to normal. You start seeing the little changes or breakthroughs here and there that are the tell-tale signs that it is wearing off. We have gone up to a year, without going back in for an infusion. But the last few have been not quite 6 months.

Today, is one of those days that I question if I should put the doctor on notice. Set up our telemedicine appointment. He’s been taking his first line of defense meds quite regularly. Yesterday and today with nausea but no vomiting and did eventually take an anti-emetic. Plus he is acting really off. Some thing is not right. If he is getting sick and not telling me.. which he has done before..

The other day he napped. For no reason. Completely out of character. Unless he is sick, or trying to recoup some sleep hours lost from staying up late with friends. Yes, he has a sleep schedule. We have perfected the amount of time that he needs to sleep to help avoid migraines.So every once in a while when he stays up or over with a friend, he naps to keep the hours evened out.

That brings us to the daily maintaining as we slowly descend and come off our medication of choice, the DHE.

We start with higher levels of Naproxen for just maintaining the day to day headaches. From there we treat based on symptoms. Just nausea, or headache and nausea. everything has it’s own treatment arrangements. Or levels of migraine. Once we establish that there might be a pattern present or the migraines are coming together with increasing occurrence and severity. We can contact the doctor to schedule to redo the DHE.

You can tell that every day is a challenge for us even during a “stable” time for us. It is how we maintain our stability. He still has daily meds he takes. Not just the “rescue meds” if there are changes to his patterns or frequency. It is about learning and adjusting to these.

Before our last infusion we had a pattern of three months that he had nausea during the same week for three consecutive months. Even having the DHE infusions, he still shows signs of the Cyclic Pattern of CVS even not being Episodic with the vomiting. This was the first time since we started DHE three years ago. But, we feel the DHE is still the best course of action for him. We did change his daily med back to one that had extended the effects of the DHE before. So we will see how that plays out. We are pushing it with the Fitness class.

Just part of our adventures with CVS.

 

 

Posted in chronic illness, CVS, Cyclic Vomiting Syndrome, DHE, hospital, IV Infusion, MIgraines, Vomiting | Tagged , , , , , , , , , , | Leave a comment

Privacy vs getting changes made

Here it is:

Morgan Hill Concerned Parent Association Vs California Department of Education lawsuit.

This has taken up a lot of time and thought the last couple days.

A community post on Facebook heralded a protect your child’s privacy and information. This lawsuit will release your child’s info to a third party that isn’t prepared to protect their information.

It started an all out attack on me.

Mainly because I was most likely the ONE person that chooses to READ information for myself.

I will admit that based on the post that was put on Facebook, I clicked on the link and downloaded the form to protect my child. What parent wouldn’t?

But, I like to make informed decisions. I then clicked on the link to the actual lawsuit and READ what it was about.

It completely changed my mind about submitting the document.

I promptly went back to the Facebook page and posted that they were entirely welcome to my kids information. I would not be completing a form and sending it in. If it would help make changes to a broken schooling system, then I was more than willing to let them look at my information.

Here is where the attacking began.

And I was okay with it. They were appalled that I was in favor of releasing my child’s information.

People were making uninformed decisions based on ONE person’s opinion of what was happening. I am encouraging people to READ or RESEARCH before making decisions.

If they would have taken the time to read what records were being requested, it would not have applied to the majority of students. Only those that were affected by disability and or requests during a time period. Which is not a majority of the populace.

However, we are all entitled to our opinions.

My opinion, is to support the process of this lawsuit. Not that it will matter, since the school district has now said that they are not involved or have been ordered to release information.

But after the extreme issues that we have had with obtaining schooling, The system is broken and needs to be fixed. This lawsuit is a stepping stone. I just wish it was three years ago when I was contacting every conceivable source I could think of, and more, about issues like the ones mentioned in the complaint. I’m just glad someone is getting somewhere with the issues.

When you have a Chronically ill child, and the school suggests that you just “stop his education until he is well enough to attend”.. The system is broken. Every child is entitled to a free education. I hope this lawsuit helps fix that.

That is my opinion.  My informed and researched decision. If my kids records and or our information with the struggles with the school district will help other kids not have to go through it.. I’d be happy to participate.

Posted in chronic illness, CVS, Cyclic Vomiting Syndrome, education, education, health, Uncategorized, Vomiting | Tagged , , , , , , , , , | Leave a comment

Fog Brain

I have been walking around in a fog for days.. quite possibly months.

I almost mailed the wrong packages to the wrong people.My thoughts just aren’t connecting with each other. More than normal.

When I was out walking in the fog the other morning and it felt like I was walking through my own head. It was murky, you couldn’t see very far and didn’t know which way was which. The air was heavy and oppressive, but cool and surprisingly  refreshing.

Today, when Hubz was mentioning how disoriented he was with his headache turning migraine, he was asking how Chewy and I deal with Migraine disorientation and fog on a daily basis. I took it one step further and mentioned when Chewy’s medication was TOO HIGH at one point that he couldn’t count backwards from 100.

It makes you think about things.

Brain fog.

Or Fog Brain.

Disorientation, lack of concentration. However you label it.. I have more than your typical Holiday case of it.

I hope I’m cured soon. In the mean time, here is the picture that I took while I was walking around contemplating my murky mind.

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Hitting Close to Home

I participated in a group support phone call the other day where the recurring theme of how to be treated better in the ER came up.. Repeatedly.

This isn’t new to us, when describing the ER or doctors in general. We have found a doctor that helps Chewy stay out of the ER for IV fluids during an Episode. But when things get bad.. We still have gone to the ER for additional Fluids.

But we are forever treated the same. Horribly. I can’t believe that people would willingly subject themselves and their kids to that type of treatment. For one: we are putting our immuno-compromised kid at risk even BEING in the ER.. There are SO many germs and things there. EWW!! Second: ever time his vein is opened it is one more opportunity for infection. Third: WHY or WHY would I want my kid to be treated horribly when they are already sick?

I usually avoid the ER, personally, because they have never helped me. They push it off on the doctors. The doctors push you to go to the ER. Vicious Cycle.

Who’s right?

I have had 3 TIA’s already.. one that has left me we no feeling in part of my foot. I went to the ER for an abnormal “migraine” that eventually became my new level or normal. They did next to nothing. No tests, no scans.. pain meds and sent me home telling me I had a “migraine,” to follow up with Neuro. So, when I had the first TIA.. why bother.. the “abnormal” migraine was my new level of pain.. I figured it had just morphed again. When I had the 3rd one: I lost feeling in part of my leg.. it took days to come back.. It took just as long to get in to my doctor. I don’t get good help in the ER.

My last visit to the ER.. I didn’t even get a room. I sat in the hall waiting for a chest CT scan.. They said it was clear just swelling. I was good to go.. You know no one even listened to my breathing when I complained of not being able to breath?

I read this article and it started me on a tangent. Plus the link to the Barbara Dawson Story.

I have seen my share of people in the ER that you can tell are there for the drugs. . Shouldn’t the treating physician make his/or her own decisions? There should be a way to not have that as part of the file. A Physician level of Hippaa that isn’t accessible. One person’s misjudgment could affect someone for life, or affect their life.

Not to jump track, or get off topic, but that was one thing we considered before seeking “therapy” options. The generalized treatment code for coping.. isn’t coping.. it’s all others.. So one person could put in your medical file that you sought treatment therapy at one time.. and you have a psychotic notation on your medical record for the rest of your life.

So same goes.  Notations that are demeaning, demoralizing and should be something that the treating physician SHOULD be able to ascertain for themselves. I think there should be a place that, that notation can be made that other can’t see. Because, If I can tell, in my limited experience.. the treating physician should be able to too. They shouldn’t need notes for anything other than treating the ailments.

What do you think?

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