Adding a few more worries!

This week is moving week. I have been packing for days and although I am almost done, there is still plenty of work to do.

I have not been looking forward to this move as I am putting my stuff in storage and staying with my Dad. After 25 years of living on my own, I am kind of sad that I have to pack it in a move home. I have been stressed about it, but have recently decided to look at it another way.

I have decided to see the good in it. I will be able to start saving some money, I will be able to not have to worry about lack of money and I will get to spend a ton of time with my Dad. I will get to live in a very nice area of town and I will be safe and loved. (of course so will my kids)

I always felt like I did not want to burden him. I know it will be an adjustment but in the long run it is short term and I jumping from one bad rental to another bad rental is just becoming silly at this point. I do have some concerns that my dog will be a nuisance to his dog as mine is much younger and a lot more energetic. Maybe it will all surprise me and they will become buddies, I hope at least.

I have not been able to work much the past few years, due to my daughter’s chronic illness and needs and my own medical needs. My knees are shot and my anxiety and depression were taking over full force. I have since started on a new medication and it is helping me to be more focused on what is important in my life. My family. My Health, their health and so on.

My daughter’s health has been a challenge to balance since the day she was born just about 13 years ago. She has Vater Syndrome(VACTERL Syndrome) Chronic Kidney disease and a whole bunch of other health concerns.

She is currently about 1-1/2 years post Kidney Transplant. She has had a lot of challenges in the past year or so but so far her Kidney seems pretty happy. She has some  virus issues that come and go and a constant battle with urine infections due to her lack of a bladder. At the end of next month we see Urology and they will make plans for surgical intervention to try to help with these constant infections. The procedure is called a Mitrofanoff and it is a long and complicated surgery at the time they will create a bladder for her and make a passageway using her appendix to allow for proper urination. It is big, she hates thinking or talking about it but it is truly starting to become an issue that is is not done already.

Yesterday was her monthly lab day. Although she was just discharged from the hospital last week and is just now finishing her round of antibiotics it seems something else is brewing. Her labs are off, her numbers are heading in the wrong direction and she is looking at another possible admission on Friday when she goes back to have a minor procedure(stent change) and repeat labs.

We are moving on Saturday so this could not come at a more complicated time, but hey that is what we do, complicated. I feel so sad thinking that the kidney could truly be acting up, but the doc said no panicking, it is not time to panic. It is time to watch for things and time to take care of the urological issues.

I would hate to think she could go through all this and potentially lose the kidney anyway. My poor little girl should simply be getting ready to celebrate her big 13th birthday. She should be ready to finish up school for year and enjoy staying at Grandpa’s where she can actually use the community pool as it is very clean and very well supervised.

Well I guess my worry hat is on this morning, but since she is in school , luckily she is not paying any attention to me. Hopefully today will be busy and distracting so we won’t be thinking about it much and hopefully I will close my eyes and my kitchen will pack itself. Yeah, I doubt that will happen but wishful thinking. As a Charmed fan, I wish I had that powers to move crap by just saying the name of the items like Paige does.. Yes I watch way too much TV!!

And here’s to the future….

After almost 15 years I saw a Physiatrist, I used to see one a long time ago. At the time I suffered from not only depression and anxiety but self worthlessness. That was a long time ago. I have learned a lot about life and a lot about myself in these years. I no longer see myself as worthless, I actually think I am a pretty cool person. I am kind, well mannered(for the most part) and I can hold up my end of most conversations and when I can’t I stay quiet, crack a joke or admit I have no idea what you are all talking about so I am just going to sit back and listen.

I think all that that makes for a little clue as to how I might think, but it does not. It would be improbable to think that someone would be able to delve into my brain and get what is going on in there. It can be a scary place sometimes, mostly just mixed up, hyped up type thought but then there is some dark and depressing,sad and confusing stuff in there also.

Most people think I just go about my days but there are a handful of people who really know me. They know that I fight depression and anxiety and although I give it a good fight now and again it gets the best of me. In the past few years I have learned that no matter how I am feeling, put to the test, I will react and take care of whatever I need to do. If we have appointments, I get to them. If we have bills I figure out a way to pay them, if we have food I cook it, if we don’t I figure out how to get it and so on. So I do fight it, so what does that really mean, nothing on the big swing of things I still need help. I still have days where it is a complete blur and I have no clue how the things got accomplished and sometimes I wonder what exactly I said to all the people I encountered.

Well as it seems, the doctor did not admit me to an institution so that is a good sign. He also did not deny that I have had these issues a long time and even though I fight it on my own, I don’t need to , he is there and he will help to the best of his ability. I need to understand that just because you take a pill it does not lessen the fact that your kid needs to endure one more huge surgery before the summer is out and she really does not want to do it. It does not change the fact that I need to work, yet how can I work. I need to take care of business yet it is stressful not having a clue how. I need to understand just because a take a pill it is not magic it will not take away real life, however it will help, it will make me more evened out and less I can accomplish the world today and tomorrow and then I can’t get off the couch for three days. It may not make it perfect but it will help me to help myself. I believe that is a really good starting point.

I also learned that me talking to people about my issues and what is going on in my mind is a good thing and that seeing a counselor will help me work out some of the emotions I have and if anything give me a good sounding board. I need that.

I have so many stories I would like to share. So many things I would like to talk about , but then people would know, then people judge, then people would look at me and have something say about things that are past tense and even if you would have done differently, I am not supernatural and I can’t go back and change events, it is simply not an option. Although that would be kind of cool. I watch  a lot of Supernatural and Charmed and the different powers are all kind of awesome, but I know better….

So I will try out some new medication, hope it works, hope I don’t break out in hives like the others in the past, and hope to be able to see my future in the bright way I would truly like to see it…

Team Angel- Spinal Fusion

Thanks for the reminder Vater Syndrome!

These are the Before and After X-Rays of my daughter’s spine. Actually they are after and before as the pictures are posted.

Just last week we had her spinal fusion done. It was about a 4 hour procedure, although this is Angel we are talking about so you probably already know it was not really 4 hours. We got to the hospital ahead of time about 5:45 am and the day hospital opens at 6. By 6:20 they are looking for a good spot to put an IV. I explained to them she is a very hard stick. Even though they heard me they really were not listening to me. Not one of the 4 nurses could get a good vein. Don’t get me wrong the nurses found veins. They just did not work from all the scar tissue. The reason I tried telling them she is a hard stick. Eventually the Anesthesiologist Doctor came in and popped one right in an artery. I guess he can do that. At this point she was slightly overwhelmed but she is getting older now and learning to deal with the fact that she can’t stop all the doctors and nurses to come in when they need help. That is overwhelming for Angel she hates that. At home(TGH) they know that, at The Joes as Angel calls it they are learning.

So now the procedure is supposed to start at 7:30 and in fact they do take her back at that time. The nurse told me I will call you once the procedure actually starts and then each hour until it is completed. I was happy with that. I figured I would be less stressed getting the calls. I go back to the waiting area with me son and a gentleman from the hospital approaches me and asks if I would be willing to be part of their pilot program , updated text messages. I thought it was a great idea so I agreed. Now time is passing, My Dad shows up, now we are sitting waiting, my son, my Dad and myself. I am starting to worry why have they not called out yet? What is going on? Finally just after 10 am I get a call from the nurse explaining that the procedure is just now starting as they could not find a spot to put a central line, All of her access spots are shot and they struggled to find one.  It truly breaks my heart as I told them this from jump.

In any event she was comfortable and did not know anything going on as she was already sedated. Each hour or so they called out and each time assured me she was doing great. I also received a few text messages in between so I was super informed. I think the texting is great as it is not as scary as the phone some how or another.

When she first came out of surgery we were fortunate enough to know the recovery nurse. She has known Angel since she was a little baby and was quite familiar with her past health experiences. She recognized right away that her potassium was way too high for a Renal patient and immediately worked to get that reversed. By that evening her lab were almost back to normal. That was a good thing as any stress to Stevie(her transplanted kidney) is scary stuff.

The next two days were spent managing pain , only to wind up having a reaction to one of the IV pain meds so lots of steroids and benadryl and eventually figured out another pain plan. By the third day she was out of the ICU and on the second day of Physical Therapy. By day 5 we made discharge plans and have been continuing to heal at home. Aside from the obvious pain she is doing wonderful.

We are already noticing some differences, such as she is taller, her ribs are no longer sticking out in the front and back making her shirts fit wonky as she says. She said no longer feels the pressure in her lungs she was feeling from the ribs pushing and she is now practicing being straight which is quite different than it feels.

I knew this would be a big surgery, I was not surprised by the amount of blood she needed, or the issues getting the correct plan for pain. I was totally surprised by how quickly she was able to shift herself and put full weight on her legs.

Tomorrow she goes to get her stitches out and speak with the doctor about the amount of pain she is still currently having and the best way to manage it and hopefully get clearance to go back to teleclasses as the more you miss the harder it is to make up in school.

@TeamAngel

Well it’s about time, Lisa….

About 1-1/2 years ago I wrote an article about Steroid Psychosis. This is probably the most personal experience I have ever shared here.

Here is a link to it if you would like to read:

https://lisabarriera.wordpress.com/2015/08/16/steroid-psychosis-a-personal-experience/

Time has past since I wrote this article. Just now I am finally making my doctor appointments and looking into helping myself. I have been seeing my Ortho for a long time because of my knees. I have been seeing primary because my Blood Pressure and I have now started seeing Rheumatology  due to the my joint pain and my primary saw something in my blood work that thought needed more attention.

What I did not deal with was my mental. My emotional status. My ability to look at the past of my life and love what was great and let go of what was not. I have made great strides in some areas and horrible in others. I have not been able to force myself to diet, to stay on an exercise routine. Some days I do great and I make efforts and others I can barely just take care of my kids and that is the best I can do.

I listen to other people, they tell me their problems. I hear them, I feel for them and I look at how much is stuff they could have controlled had they really been paying attention. I know for myself, I have let certain things happen. I could have stopped them but it would have changed everything and I was too afraid of the change, did not want to be the butt of more bad decisions, therefore hearing how all my decisions are bad somehow or another really screws with my self esteem.

When I read about that last year of my husbands life, and I read how I was feeling when I wrote that article it makes me feel those emotions all over again.I woke up yesterday, totally disturbed. My mind would not turn off. I was distraught at something that was said about me a long time ago and I thought I put it to smash, yet clearly it is still an open topic of discussion by people who have done nothing but lie and been lied to. Not by me I just went along with it. My husband said it is none of their business(meaning anyone) and he would not tell the truth about things that honestly there was no reason to lie about. Simple things like his brother inviting him over and him saying oh I can’t go because we have to do this or that, when in all reality we just had no gas in the car. He would tell his family that he had money from this or that, rather than no my wife pawned her ring so we could pay the light and buy this birthday present for you. Or even better They gave it to me. Who was they ?(no-one) why would they just give it to you. But funny they never questioned this. He said it, surely it must be true, although they are always the type that even if they do something nice to you they would say don’t tell anyone, I did this.

See if you are always lying, chances are you will believe others are lying too.

I have nothing to lie about. I tell the truth in my writing. I share information that is not anyone’s business yet I feel like sharing it and I do. I don’t deny that my father taught me the value of money, he taught me to invest and all kind of smart things. I heard him but clearly I was not listening. I have managed to be in my 40’s. Not a dime in the bank or anywhere else. No 401K no savings, no retirement plan, and to top it off just about no income. I was taught better, I just did not learn. When my daughter(my youngest) came into this world as sick as she did , I had no idea what the future would hold, and quite honestly income, and savings and money was rarely a thought, only to get through the month with bills and keep the kids happy- or happyish. We did our best. I worked full time he stayed with the kids. With the little one having a million appointments and all it truly worked out of the best. When I lost my full time job everything went hectic for a bit but we figured it out. I got a part time job, he found some apartments to manage part time and we made do. When he passed, all those appointments became mine. My daughter got listed on the transplant list and well if you read some of my other posts you can pretty much see where we are at now.

Finally I have made an appointment with a psychiatrist.

This appointment is way past due as I should not still be so upset about the comments being made. I should still not wake up and see my husband trying to choke me. I should not sleep three hours a night and then struggle for the next 6 with my brain and any combination of emotions until I finally knock back out due to exhaustion, unless we have an appointment and there I will be up again for the day only making the sleepless pattern continue.

I am going to find a way to live with all this pent up emotion. Figure out is it anger, is it depression and anxiety, is it fear that I loved someone so much that seeing him go crazy made me go crazy?I don’t have a clue, could it be everything I see with my daughter. Could it simply be lack of support or what I don’t know but in about 6 more weeks I will be able to start working on that. Good thing I am not suicidal as long as the appointments take to get but what can you do at least with my lack of income , I am getting medical help.

Don’t wait this long , it is to overwhelming.