Thursday, May 14, 2015

When They Grow Old...

As many of you know, I have this amazing dog named Molly. She is a 13 year old (14 in two months!) basset hound/black lab mix who I adopted from a local shelter with my ex-husband back in 2003. She and I have been through it all together: serious illness, a divorce, a job loss, loss of another pet for me and serious illness, severe separation anxiety, a divorce, and the loss of a dog brother for her. Through it all, we have been constant companions.

Molly is different now than she used to be and the change happened sometime around the time I got divorced and moved into my own place with her. She used to be the hyper one, not especially affectionate, and always wanted her own way. She still wanting her own way, but the move changed her. At first, it was for the worse. The separation anxiety she experienced was bad enough that she almost hurt/killed herself trying to go through a window when she was home alone, I was renting at the time and my landlords were not appreciate of her constant howling and barking every single time I left the house. It was a hard time for me as well, because I was disabled and even getting to doctor's appointments was a struggle, because I didn't know what I would come home to.

It took a long time, but we worked it out. A year of behavior modification and psychiatric medications, as well as visits to a dog shrink at Tufts University, got us through the bad parts. Not to mention several kind and compassionate friends and family who would watch her for me during the rockiest of times.

I will be honest. I almost gave up on her during this period of time. My own physical needs were so extensive at the time that I didn't know how I was going to mange the severe separation anxiety because I obviously had to leave the house. I remember one afternoon, I came home to find her panting and in so much distress. The apartment was torn apart. I sat on the floor with her and cried. Then I google searched basset hound rescues and found the one I was going to call.

I never made the call.

And from that point on, that is when the change happened. She was completely and utterly devoted to me. It's almost like she knew...

A year later, Molly, who was about 8 years old, started to have multiple medical problems. The vet bills mounted up and the care she needed increased. The most notable incident was the day I came home from a friend's funeral to find that she couldn't get up and down the stairs and cried every time she tried to move. I still vividly remember the pain in my heart upon hearing her cry like that. It sounded like she was being tortured and I had never seen her react to pain at all, never mind as if someone was beating her.

Several days of hell ensued. Multiple vet/E.R. appointments got us nowhere. Then the day after Christmas, I realized she was almost completely paralyzed. I was able to get a hold of a supervisor in the E.R.who said she read what happened when Molly was brought in and I was to put her in a car immediately and rush her to the MSPCA Angell  Boston Animal Hospital, two hours away. Because of my own limitations at the time, I had to call a friend to get her in my car for me. We drove to Boston, during a major winter storm. I honestly thought we might not make it there in one piece. I also knew that I had to try and get her there.

She received the best possible medical care there. After a lot of tests, I was told that she had a ruptured lumbar disk in her back and that was why she was paralyzed and couldn't go to the bathroom correctly. I was told that a $5000 surgery was needed and it was thought that the surgery would help her walk again and get rid of her pain, but there were no guarantees. Even if the surgery accomplished all this, she would most likely be incontinent of urine and stool the rest of her life. I could do the surgery, or have her put to sleep. The decision was mine.

I don't know if words can adequately express the agony in making that decision. The only financial resources I had at the time was some money from the sale of my house during my first marriage. But, I was also on disability and that was the only money I had in the world to fall back on. Taking $5000 out of it could have serious consequences for me in the future. I also wanted to do what was best for Molly. I didn't want to prolong her life if it meant a life of  pain and suffering. Would I even be able to care for her long-term? The aftercare from the surgery alone would be incredibly difficult.

I remember my boyfriend at the time (my now husband) just holding me and letting me cry. I prayed a lot. I decided to go ahead with the surgery.

Molly came home several days later. She was never incontinent after the surgery and made a full recovery. The doctors were astounded. I know we were lucky. We trudged through the following few weeks of her recovery together.

The years since that day I made that difficult decision have been a blessing. I got married. Molly took really well to my new husband and once we moved into his home, she rarely ever had separation anxiety issues. She remained my constant companion. She continued to be by my side during several medical crises. She kept me company during those long days and weeks when I couldn't get out of bed and my husband was at work all day. She was my emotional healer.

It has been an interesting experience watching her age, and a precious one at that. I've never been responsible for a senior dog before and I will say, I treat it as a privilege. I watch her get grayer with each passing week. I see how drastically she has slowed down in the past year or two. No more one hour walks romping through the park. No more play dates at the dog park because it is just too much for her. We have to be vigilant about keeping on top of her pain medications and some other health issues, especially as the arthritis continues to progress from her back surgery all those years ago. I have made a commitment to her that when she is ready to go, I will not prolong her life.

I will not let her suffer.

Mother's Day passed by recently and I was so appreciate of the dog mom friends I have on Facebook who were so happy to claim themselves as dog moms with all the different memes. I never had children of my own and Molly has helped fill the maternal need that I have. I have taken some crap about that and heard all the jokes, but really, it is serious business. She instinctively knows when I am suffering, either physically or emotionally. She acts in ways that make my husband and I laugh so hard, we can make a whole evening of it. She gives and gives and gives to us every day, expecting nothing in return. Sometimes society, and the people in it, judge how we love. They say there is no love like the love between a mother and a child. Or you have not truly loved unconditionally unless you have a partner or a spouse,

No, love is love. We each get to define it for what it is and for how we feel it.

I had an opportunity this week to talk to someone about Molly. A person who doesn't know her. I explained to her that it is a love like I have never known. It's not better or worse than the love I have for my husband or say, my parents, but it is very different. It is the fierce, protective love that is demonstrated by putting her needs before my own and trust me, it has happened many times. It is a quiet, unconditional love that has no rules; no boundaries, no expectations.

It is a love of true acceptance.

Up until recently, I was sometimes afraid to love Molly over the past two years. I knew she was getting towards the end of her days and I thought the pain of the loss would be more than I could bear. A few things happened to change that. I started leaving situations out of my control in God's hands. I realized that I could make more out of the time we do have left. I would also see profiles on dog rescue sites of elderly dogs abandoned by their owners, because they could no longer care for them. Dogs who have multiple health issues. Elderly dogs who get treated in many ways similar to elderly people in this country-like they are disposable.

I made the very difficult decision this week to have Molly put under anesthesia to get her teeth cleaned. It was a difficult decision because of her age, a heart murmur and a new found problem with one of her liver tests.There was some concern though that two of her teeth were very bad and maybe causing her pain, Some of those in my life disagreed with my decision, but I was OK with that. I made my decision based on my promise to her: that I would not let her suffer, no matter what. If it was God's will to take her during the procedure, then she would go peacefully, with no more pain.

The procedure ended up being twice as long and twice as difficult as anticipated. Seven teeth had to be extracted, as well as some root work that included a bone graft. A biopsy also needed to be performed. She is now recovering well and while I am grateful, I am not really surprised. She's a fighter that one. And now, she will live whatever time she has left without pain.

And we will love her just as much as ever.

Friday, May 1, 2015

Divorcing Sjögren's

I cannot believe I didn't blog the entire month of April. I knew it had been a while, but I didn't think it had been that long. I sat down this morning to do some writing and look over the blog design, as well as my Thoughts and Ramblings Facebook page, and I realized how much I have missed writing. I also realized that last month was the FIVE year anniversary of this blog!

Lots of stuff has been going on. For the past couple of months I have been working vigorously on a few things to help improve my quality of life, physically, mentally, and spiritually. I will be honest, it has been super tough. It usually is when you take an honest look at who you are, where you came from, and where you want to be headed. It has meant being rigorously honest with myself and well, let's face it, that can really suck sometimes. However, I am now seeing the benefits of all that hard work and I am excited about the future.

It can also be tough heading into uncharted territory in regards to my health. I have had some neuropathy issues going on as well as some possible autonomic neuropathy issues. I am currently on an aggressive alternative medicine course to try and manage those symptoms and if that doesn't work, I already have a very precise and well thought out traditional medicine plan worked out with my rheumatologist in terms of testing and figuring this all out. My guess is, it will be a combination of both alternative and traditional medicine that will help me deal with this new part of my Sjögren's journey.

The good news is that I realized yesterday that for the first time since the autoimmune journey began around 2007/2008, this is the most confident I have ever felt with every single one of my medical providers. I have had some great doctors in the past, but at this point I feel like I am being completely heard and I am an active partner with every one of my medical providers. I have ten providers (both alternative and traditional) that I am actively seeing now and I don't experience the anxiety I used to have. As I have talked about before, I made some difficult decisions last year about switching some of my providers in order to obtain better care and it's nice to see that those decisions worked out for the best.

Besides the neuropathy pain and dryness issues, I am actually holding my own. My joint pain and fatigue have improved dramatically. I am certain that  the improvement in the fatigue is related to someone FINALLY listening to me and following through about my thyroid and making some medication adjustments, as well as a change in my nutrition. The thyroid is not perfectly regulated, but it is much improved. Everybody kept blaming the fatigue solely on the Sjögren's when I have also had this longstanding thyroid issue since I had radiation to my neck a million years ago.

Besides working at my nursing job more recently, one of the other reasons I have been off the blog grid is that I have been working hard at changing the way I deal with Sjögren's and my health. That has been a gradual process for a few years, but I have been looking at it much differently lately. I think I have blogged before that I see a therapist who has experience in dealing with chronic illnesses and we have definitely made progress.

However, things kind of got to the point a few months ago where I was just sick and tired of talking about this illness all the time. I wrote a book about it, I talk about it at appointments all the time, and I was blogging about it a lot. Thoughts and Ramblings, and its associated Facebook page, is not all about Sjögren's or even autoimmune disease, but that's the direction it happens to take because so many of my readers have autoimmune illnesses and it is a place to share and exchange good information about the illnesses and their treatments.

And that's not going to change; but I was at a point where I needed a divorce from Sjögren's for a while. We all know that it's more like a separation rather than a divorce, and even the separation can only be partial because this illness invades every aspect of our lives. But I was able to find some separation. I stopped complaining about all my symptoms either on social media or to my family/friends. I stopped doing follow-up appointments with doctors just for the sake of having a follow-up appointment when things had been stable in that particular area. I stopped researching stuff online and lessened my visit frequency to the online Sjögren's groups. I still took my medications and attended necessary appointments. I was still spending about two hours a day dealing with the illness and its symptoms. But two hours a day was better than four!

I decided that for now, I am not writing another Sjögren's book.

I felt guilty at first because I know this blog, the Facebook page, and me as an individual have a lot to offer to those suffering from autoimmune illnesses. And, they (and I) will still be here. But my brain cannot be Sjögren's focused all the time for the rest of my life. I found that when I did do this separation, it was a very good thing. I pushed myself harder, especially at work and other projects, and I found that I can be of use to this world in other ways. I also found that my anxiety lessened significantly, I wasn't as fearful, and I could cope better with the physical challenges that did come my way.

I have been criticized in the past (even by a person with Sjögren's), and somewhat recently, for some of the things I say and especially write, in regards to keeping a positive outlook when dealing with a chronic illness. The feedback mentioned that I may not always be realistic in how miserable this illness can be and that not every autoimmune story has a happy ending or a positive lesson to teach. Or I'm told I must have a mild case of Sjögren's because I am upbeat. I tell them to go read my blog for the past five years and read about my journey. My attitude and disposition is inversely proportional to my physical experiences. I have a positive attitude most days, not because I don't suffer or struggle, but because I actually get to be alive.

And loved.
And I get to love back.

I know many people may not want to hear this, but I think many times, myself included, we get ourselves so wrapped up in our illness that we don't see any other possibilities except to be miserable or be a victim. And you know what? I get to do that sometimes. I get to be upset. But the problem is we take on our illness as our identity instead of it letting it be a part of who we are just like being a nurse or a writer is part of who I am. Rather than living my life as a victim, I want to live it as just me. Chris.Those of us with Sjögren's do not corner the market on pain and suffering. Those of us with autoimmune diseases do not have exclusive rights to the pain and suffering in the world. We all have something, whether it is physical, emotional, or spiritual pain. It has been that realization that has enabled me to recently step out of Sjögren's and step into helping someone else. It has enabled me to step out of Sjögren's and step more into the world.

So what can you step into today?