The Struggle Is Real

  Fear escapes no one. I have been struggling the past few weeks from a stigmatized condition I rarely open up about. When I was younger I was diagnosed with both social and generalized anxiety. At times it can be debilitating. With that comes depression due to conflicted inner feelings. Intellectually I know what I am facing is a little scary but my body reacts with utter fear and irrational thoughts. That is part of the battle. Then it turns into a personal comparison with others around me who do not struggle with anxiety. I may see them uncomfortable in the same situation, but not to the severity of my own uncomfortableness. Why does my body not react that way? I wonder.  I know trying to force the anxiety won't work so I often just let it runs its course. Lately it is being compounded by depression. I believe this is partly due to the current pandemic and civil unrest in our country. A lot of it is stemming from my health as well.

  If you've followed my blog you know I have a complicated web of illnesses that continuously battle one another while continue to progress themselves. A year ago I injured my right shoulder and spent 9 challenging months in rehabbing before I had to abruptly stop due to the pandemic. With that I continued a program at home they laid out for me. I reached my final goal about 2 months later. Within days I broke my foot in two places. What should have taken 6-8 weeks to heal wound up taking a little over 5 months. All but the last 4 weeks I had to be non-weight baring. For an active person, that is torture. Endurance was the name of the game. But that was not all that I was dealing with throughout this time.

  In early September it was discovered that my gastric stimulator battery had died and needed to be replaced. Within 6 days I underwent the surgery. Prior to the surgery my blood sugars were so erratic it was driving me crazy just making it through the day. My lack of treatment from the gastric stimulator added to the lack of activity from a broken foot was the perfect storm for uncontrollable numbers. When the battery was replaced I noticed a slight improvement, but not a lot. I did have the stimulator turned up a bit, but the reality is my gastroparesis is far more severe than a lot of others who have a stimulator. Their batteries may last 5-10 years whereas mine has gone from 3 years, down to 2, and now it is estimated to be 18 months. Not only is that overwhelming, but it was a choice between this and a feeding tube. That decision will be revisited next time the battery dies in a year or so. Although I know I made the right decision this year, the decision for next time is looming. I try to focus on the present, but that thought is hard to push away. And yet my struggles did not stop there.

  Due to some discouraging news that I had osteoporosis discovered after m foot was broken, my endocrinologist worked with my gynocologist and primary care doctor to figure out an appropriate treatment for a young 37 year old woman. They decided on an infusion )administered by IV) I will receive yearly. They warned me of "flu like symptoms" in the days that followed, but what they should have said was "incredible pain from deep within accompanied by vomiting and diarrhea". I felt so horrible I thought I would die. I am good with pain and face things head on so you know this was rough. Thank goodness it is once a year and now I know what to expect. But this was actually tough emotionally because of my age. Not only am I frightened by breaking another bone, but I am being treated for osteoporosis in my 30's. My immune system is being beaten down.

  The second day of feeling so horrible I get an email from my gastroenterologist. She said I had active antibodies in my blood work. We are doing everything right so my antibody count should be down. She decided I need to have an endoscopy and some biopsies. This means I will be put to sleep to have a camera go down my throat to my stomach to take pictures and obtain tissue samples. I lost it. I was healing from a broken foot, surgery, and an aggressive treatment then I get an email detailing more concerns. Plus, who wants to fast only to be put to sleep and have something shoved down your throat? I wake up feeling awful. My throat tends to hurt for a few days. And I also tend to not handle food well for a few days following. In addition to that, what will she find? I rarely end up hearing "You're all good!" They have also warned of stomach cancer due to my digestive damage. I am actively trying to avoid those thoughts, but I don't want to be put under AGAIN.

  I am now rehabbing my foot. I am incredibly grateful for making it this far. My shoulder is good. It will never be perfect, but it's doing great. Big plus. Umfortunately the mental strain of the two is definitely lingering. Although I am glad to have a new stimulator battery I know what the reality is and I don't really like the view. I am now constantly afraid of falling or breaking a bone because treatments are not cure-alls. And now my immune system is kicking up unnecessary antibodies causing me to undergo more tests. I'm scared. I am strong. I am a positive person willing to be fulling active in my healthcare. I am hardworking. BUT I am scared. I have rarely asked myself, or God, "why me?", but lately it is creeping in more than I'd like to admit. I know God has a plan and I am impatient to see the end game.

  There it is. We are going through some incredibly unprecedented times. Relationships are being destroyed or damaged left and right throughout our country and the world. My poor only son has not been around his peers in months. He is doing hybrid learning, but he may not even be doing that soon. I am getting too concerned with COVID numbers rising and my health challenging me at every turn. Humans were not made to live this way and we have had no opportunity to adapt so our reaction of chaos and panic seems natural. My health and fears of what is to come are overwhelming. My body is exhausted but I push through because more needs to be done. I feel like a pinball bouncing from barrier to barrier but not getting anywhere. I am stressed, depressed, and my anxiety is through the roof. 

  No medication will help. I do not like taking meds anyway so I often refuse them if it is not life sustaining. The particular medications to help treat anxiety and depression cannot be used in a patient with my digestive disease because it is not absorb or metabolized properly. I do exercise daily. That boosts all the endorphines.

What Can I Say?

   I have had a case of writer's block. Possibly writer's fear or anxiety. The world is so chaotic, I am a ball of anxiety and fear. Fear of the unknown. Fear of losing friends and loved ones, whether to the pandemic or differing feelings about the current state of our world. Not only are we in the eighth or ninth month of social distancing, lockdowns, and restrictions, but we are also in the midst of the most important election in a lifetime. In addition, there is social unrest due to racial disparities and injustices. Ultimately, I just have had no real, logical words to express myself. Had I attempted to write before now all that would be said would certainly be nonsensical, emotionally driven statements. I do not need to force my ideas on others and I am too sensitive for someone else to force their ideas on me. I finally decided I was rational enough to sit down and document where everything stands in my world today.

  Today is election day. Today we get to decide who our president will be for the next four years. Due to the pandemic, I voted by mail weeks ago. That took some weight off of my shoulders. As the day has gotten closer and closer, people have gotten less civil and more emotional. There is anger, fear, anxiety, righteousness, you name it. The tension has become so great there have been security measures set in place for riots and other violence prevention. We have a president who does not want to accept a loss and has said there will not be a peaceful transfer of power if he loses. We have a candidate who was once the vice president, and whose running mate is a mixed-race woman. Powerful things have been said on both sides. The outcome of the election is likely not going to be heard today. The country is in a serious state of unrest. I, for one, cannot wait for it all to be over with, no matter the outcome. Stop the insanity and bring back civility. That is all I have to say regarding our government.

  As far as I go, things are running as usual. One thing slows down and another thing arises. One of the best things that has happened recently is that I got a new insulin pump. Technology is always progressing making better and better tools for treating diabetes. This particular pump communicates with my continuous glucose monitor. It is called a closed loop system meaning it alerts me when my blood sugar goes high or low. If it starts to trend low, the pump can suspend insulin delivery for a short time to allow me to get fast acting sugar to correct it. This helps prevent severe lows and allows you to be a bit more active without having to prepare so much. Often before activity a diabetic will lower the amount of insulin they receive to prevent a low blood sugar. This pump helps. It also can predict a high blood sugar coming and adjust it by increasing insulin. For someone with gastroparesis, that is critical.

  Of course, I still have to monitor and manage my diabetes. This newer pump just adds that extra layer of protection. I have mentioned before how difficult managing diabetes is with gastroparesis. The food does not travel predictably through the digestive tract making it hard to fine tune insulin dosages. I often drop low too quickly and end up in the severe low blood sugar range. That is equally true of my high blood sugars. Part of the problem with that is the possibility of stacking insulin making it more likely, and more dangerous, that I will end up with a severe low. A common problem is a rebound effect. Your body recognizes your blood sugar is low, but it recognizes it too late, usually after you have taken some form of fast acting sugar. In turn, a few hours later your blood sugar sky rockets because it has corrected itself much later and you already treated with juice. Then a correction or extra dose of insulin is needed to bring it down to normal and often times that roller coaster continues. This new pump will not prevent highs or lows, but it will help reduce the occurrence of these roller coasters. Not only are they damaging, but they feel horrible too so it's a major score for me. (side note: inulin is not cheap and the government has not done anything to change that. Diabetics are supporting each other to help us all afford what we can get) But I can never forget that Type I diabetes is my only challenge.

  A few months ago I opened up about being diagnosed with osteoporosis at the young age of 37.  After a few months of doctors consulting and brainstorming they finally decided on a treatment to prevent the risk of more serious broken bones. It is an infusion called Reclast. It is given once per year so it seems easy enough. Well, yes and no. I went for my first infusion last week. It took almost two hours. I was in the infusion center alone because COVID is still spreading so there can be no additional people in the facilities. They warned me it may cause flu-like symptoms for a couple of days. What they should have said was, "You may feel like you are dying, but it only lasts a few days." The next day I woke up with a fever and every inch of my body hurt. I have a high pain tolerance and this HURT everywhere. I was vomiting and more. It was awful. Luckily it did only last about two to three days and luckily this will only be once a year. Now I will know what to expect. But wait, there's more.

  The evening I felt the worst I received an email from my gastroenterologist that said I had some antibodies in my blood work and she would like to do an endoscopy and some biopsies. Most of the antibodies are related to Celiac disease. I am very strict on my diet so there should be no active antibodies. At this point I have no plan. I want to hear from her exactly what the plan is and what she is looking for in particular. I also asked her to give me the worst case scenario and the plan that would follow. I have not heard back as of yet. My issue is simple. I am tired. 

  I spent almost a year in physical therapy for a labral tear in my right shoulder. Then I broke my foot four days later. I spent five plus months laid up. The last month of that I had surgery to replace my stimulator battery. I am in physical therapy now for my foot. It has been about five weeks. And last week I had one of the most difficult treatments with that infusion. I am not so sure I want to be put to sleep again, have biopsies done, wake up with a sore throat, and feel crummy for a few days. Honestly, I don't want more bad news. I am overwhelmed. I normally would face this head on and go for it, but not this time. I am just exhausted emotionally and physically. My thoughts are to wait for more answers before I agree to anything. And in the meantime I am going to spend some time with my son.

  So without further ado, I am signing off. My plan for the day is to watch Disney movies and avoid all news and commercials. We will sing, and laugh, and all that good stuff. As tough as it may seem to believe right now, God is here. He is asking me to be still and listen. That's what I intend to do. I pray that all of you are well. And go exercise your right to vote. The sun is shining, even through the clouds. Never forget that, especially on the hardest days!!