Marching In Place – Page 6 – Living and Struggling with Agoraphobia

Marking Time

It has been two weeks since by world changed with the passing of my son, Robby. I have tried staying busy by doing projects at home, shopping, running an endless number of errands, cleaning and having lunch with friends. To block everything out I have been obsessing about the planning for the memorial service, but that will end soon. Like in the beginning I talk and participate in whatever activity but I don’t feel anything-well I do feel empty and lost most of the time. Some days I feel like I am just marking time, waiting for something to feel right, but so far no. Everyone keeps telling me how good I am doing and that it’s my turn or I can do whatever I want-really?? That doesn’t feel right either. I have no idea of what I want to do or where I go from here. All I am sure of is how much I miss my son. And the only thing that takes a little of that pain away is knowing he is at least in a better place.

Frustrations and Heartbreak

I haven’t posted for a while, my life has been a new level of crazy. April 3 my son Robby was admitted to a hospital where he stayed for 31 days. He had some horrible things happen to him there and the only way I was able to get him out of there was to put him on hospice long enough to get home. This lead to another hospitalization (different hospital) so we could get him on a feeding plan. We thought that had worked but the day after he came home we had to stop that feeding plan.

We saw one of his doctors and the only option was TPN which is iv nutrition. And so the battle began-for three weeks I fought and fought, I faxed documents and I had endless conversations with his doctor who also fought and fought, faxed documents and was just as frustrated as I was. But the infusion pharmacy would say we just weren’t quite there. In the mean time Robby was getting weaker and losing more weight, but he was hanging in there. The last hurdle was down to one blood test-albumin. Robby’s albumin was 3.6 and it had to be 3.4 or less….seriously.

At the three week mark things took a horrible turn, we couldn’t get him awake and we couldn’t get a blood pressure reading. We called 911 and they couldn’t get a reading either, I told them about his lack of nutrition so they checked his blood sugar which was less than 20. They took him to the second hospital because all of his doctors are there. He was in a coma, he had severe septic shock, pneumonia, was severely malnourished and his lab values were a mess. They tried more than once to start nutrition but every time he got refeeding syndrome which caused his lab values to get even worse. They ran so many tests but answers were in short supply. The ICU attending doctor told me they felt he was not waking up because they believe his blood sugar had been that low for a period of time which caused brain damage and you don’t come back from that. We also learned that some of the meds he takes create a false high reading for albumin-you would think a pharmacist might know that.

So the day I was dreading was here-decision day. Robby’s doctor that fought with me for the TPN had been there to support me at the hospital, but this time not as his doctor but, as he put it, as family. He came and we made the decision together that the best thing for Robby was to let him go. My heart broke. This was the hardest thing I have ever done. So at 2:28AM on June 11th Robby passed surrounded by some of the people who loved him and is now missed by so many.

Being Invisible

In the process of trying to get outside the house I found ‘security’ in the form of a broom. I held onto it (like a crutch) and it made me feel a little more grounded. So when it came to getting out of the car I was stuck, but a friend had an idea….a wheelchair. Well one thing I had learned in therapy is it isn’t about the process (or what it takes) it is about acheiving the goal. So the wheelchair bridged the gap. Dr Eppler called the wheelchair the rolling broom…well yeah!!! Soon I was going more and more places.

My son has been in a wheelchair for 25 years and I thought I had seen all the reaction there were from people….but no. When I am out in public in my wheelchair I have become invisible. I have had people walk into my chair, hit me with thier shopping cart, cut me off so that I have to stop fast to keep from hitting them and then if they finally ‘see’ me I usual receive a nasty glare.

Now with my anxiety I don’t do well with an audience, but surely there could be a happy medium!!! I don’t want special treatment, just equal access to society….it took a lot of work and a long time to get back out there…I intend to stay out!!!!

Reality Bites

This past week has been full of way too much reality. We are still living through the consequences of some decisions I made, sometimes it would be better to spend more time thinking, but now it’s done!!! This week also brought more medical appointments for Robby and I. Then there was the big reality of the week, my first IVIG infusion. I have recently had testing that showed that my immune system is not working (simple explanation). So these infusion treatments will help me be able to get better when I am sick and hopefully not get as sick. Well I started having side effects during the infusion and by the time it was done I had a headache, horrible low back pain, chills and nausea. By later I also had muscle pain, lightheadedness, sensitive eyes and fever. As of today I am still having these side effects, the only thing that has improved is the fever. I keep telling myself this is supposed to make me better. Then when all else fails my old friend anxiety shows up, just when I thought it was gone.

So, as always, I am trying to remain positive. But I admit there are times that I feel defeated by life, so I take a few moments and then I once again try to find the upside….this is at times a very difficult task!!!!!

New Year, New Memories

A goal (not resolution) I had for the new year was to make more memories with my son, Robby. To that end Robby and I planned a visit to Knott’s Berry Farm with Sabrina, one of his nurses. It was cold and windy, but none of that mattered, we had a great day!! Robby made friends right away with Lucy and Snoopy!! but the true highlight was captured in the second picture. Robby tends to hang his head now. So we saw Snoopy again, but this time he knelt down to Robby and snuggled with him, it was heartwarming. Snoopy stayed there with Robby until he finally looked up and saw Snoopy!!! I thanked Snoopy and he gave me a big hug!!!! Memories like that are exactly what I am hoping for, they will be something to hold on to when Robby is gone.

I don’t want anyone to think this year is going to be a blog full of memories with Robby (all though there will be some), but I am using this as a reminder-life is short, don’t miss it!!!!!

Another New Year’s Eve

I am trying to refect on the fact it is New Year’s Eve again. It feels too soon, this year has flown by. So much has happened this year, some good and some bad. I have watched my son’s health decline further, we have accumulated more doctors, we had some fun times with friends and spent too much time in hospitals/doctor’s offices/the emergency room to name a few. As I write this I am sick…again, something that is happening too much. But through it all what keeps me going is the love and support of a small group of people–they know who they are!!!

As I continue to reflect back on the year I am, as always, grateful for another year with my son, it hasn’t been an easy one, but it is still a gift. We were able to find time for some fun-we had a fun day at the fair, we made a day trip to San Deigo at the end of summer and at the holidays we spent a day at Knott’s Berry Farm. We were able to go on our fun outtings because of the help and support of Robby’s nurses, who are like family to us.

I have also been spending some time looking forward, I have some big decisions facing me in the new year. I am considering moving, a decision I have put off until after the holidays. It seems like an enormous undertaking, but in the end might be the best choice…so we will see!!!

I have made some commentments to myself, I don’t do resolutions, they don’t hold up well. I am going to make more time to work on the book. I am going to do better about posting more here on the blog (it’s not like I don’t have anything to write about). I want to make more memories with Robby. And I want make sure that our unique ‘family’ knows just how much we love and appreciate them.

So I guess it is time to take a deep breath, look forward and take a big step forward into the new year……….

Conjested Decisions

The other day I was driving the freeway to yet another doctor’s appointment and the traffic was very congested with people trying to change lanes to get off. I realized in that moment that is what my life is like right now. I have made some decision that seemed right at the time and now we are living the consequence of those decisions. My life feels crazy and congested and I am always looking for an opening to change lanes at get off this crazy trip. But so far no luck, but I am determined to survive all this or at least find a less conjested route.

The irony of all this is just a few short years ago I could even go out, let alone travel the freeway.

Somethings Never Change…….

Well it has once again been a long time since I posted and as always life is the reason. I feel like my life is upside down at times and some days I can’t find the time or energy to be anxious about it! That is really sad! I would love to share that the reason was I was on a great vacation or maybe there was nothing to write about…but sadly no! Things with Robby have been bad, his health continues to decline and at times I feel like I am bailing water on the Titanic!! I seem to vacillate between felling defeated and feeling guilty. I am working on it, but it may be yet another thing that can’t be fixed!

I am excited about the book; I have my new computer and so work on the book is going to resume-probably late at night when it’s quiet but that’s ok. I have missed working on the book and the blog. I also have some pressure on the book and not just from Dr Eppler, we have a focus group reading the finished chapters and they are wanting to read more…ok!!

I am trying hard to get at least some parts of my life back on track, so that should mean more posts or at least more often….fingers crossed!!!!

Same story…….different day

I find myself once again in a familiar place. Almost two weeks ago my son Robby went into the hospital. Now that isn’t an unusual event for him, except this time it was a planned in advance. I can’t remember the last time that happened, but he needed a procedure so we scheduled it, making possible to pack and prepare in more that ten minutes. He ended up staying longer, something always seems to happen. Now he is back in the hospital, as so many times before. You see Robby always seems to get discharged just a little too soon and then before you know it we are back in the er and many times readmitted to the hospital. That’s what happened this time. His planned procedure was to get a g tube placed, of course he had additional problems, while in the hospital his seizures got out of control one day and he had six grand mal seizures on one day. He also was developing a cough and I tried to get the issue addressed as I hate to go back to the er. Dehydration brought us back, we tried to deal with everything at home but we couldn’t get enough fluid in him.

I found this unfinished post while once again sitting in a hospital room with my son. And again he was in the hospital earlier in the week, admitted through the emergency room with yet another uti and sepsis. In on Monday, discharged late Thursday morning and back to the er at 2 am Saturday morning and, of course, readmitted with a secondary infection and seizures, four Grand Mal and two Tonic seizures this time.

While the reasons for admission is different, the main difference between these two events is the dates. Every time he is inpatient at the hospital I hope that he will stay long enough so we won’t have to come back, but no. My hospital mantra has become ‘I want to go home, but I don’t want to have to come back.” So far it hasn’t worked, but you know me, I stay optimistic-why I don’t know.

Anxiety and Living

I, like most people, have experienced some degree of anxiety in their daily life….that’s not what I am referring to here. Instead I am referring to the anxiety of the ‘survivors’-those left to try to move forward. There is so much involved in moving forward–it can include making final arrangements, the difficult task of notifying people, trying to find a way to deal with the pain, dealing with property and belongs or even just hoping to get through another day. As for me, I have long believed that death is usually best for the one who dies-no more pain, anxiety, illness and limitations. But as for those of us left behind—well it sucks.

There is the obvious question of how to move forward—not an easy or simple task. Even after the funeral or memorial and/or burial there is the anxiety of what’s next and how to cope. Then if all that isn’t enough, there’s the anxiety of guilt—did you do enough, did you make the right decision or were you there enough……

Then in case you are not overwhelmed with enough anxiety, there is the nagging and anxiety filled question-when will things seem OK again? Or will things ever be OK again? When my husband was killed my Grandmother gave me the best answer to that–she told me that people will tell you that time heals all wounds, but she said it does not. Time, she told me, just lets you find a way to live with it. I have found that to be true, I don’t think you ever really ‘recover’ from the lost of someone you love–I’m not sure you should. That probably sounds strange, but all the people in our life, both living and those who are gone, are all part of who we are and if you just cut those parts away what is left? Now that is a question filled with anxiety!!!