Bluemoon15

Ever since I was diagnosed with fibromyalgia 14 years ago, my husband did all of the long distance and inclement weather driving. I never had a good sense of direction and always found long distance driving in unfamiliar territory a bit stressful, but after my diagnosis, I didn't trust myself. My cognitive symptoms scared me. Since my husband passed in January, I was forced to get back out there in all kinds of weather. Having grown up in the country, navigating snowy roads came right back to me. Driving in icy conditions scared the hell out of me. However, the biggest challenge arrived yesterday, when I had to travel 35 miles to a destination I have never been to before. I hadn't even traveled to this town since years before my diagnosis and was not at all familiar with the section of town I needed to go to. Everyone who I know with a vehicle works during the day, so I had no choice but to venture out on my own, praying most of the way. This was a very important appointment. The folks at Social Security Disability were sending me to see a doctor for an independent evaluation of my symptoms, and I knew that his opinion would feature prominently in their decision to deny me, as almost everyone is denied after their initial application. Sadly, the fact that I drove myself was met with shocked disapproval. Every staff member I saw asked if I had done so, and every one of their faces mirrored my "mistake". By the time the doctor inquired, I was ready to explain why and how difficult it was for me to do so. I doubt that mattered. Nevertheless, I made it up there and back with only a few unsure moments and wrong turns. Once again a fear evolved into a feeling of empowerment. And for that, I am so very grateful.

My story begins in 1993; my husband was 29 going on 30. Up and until that point, he was the healthiest and strongest person I ever met. He remained the strongest person I have ever known for another 22 years. Yes, this is a 22-year saga. If you read it to the end, God bless you. It was just a few days before our son?s second birthday and my beloved was a passenger in a vehicle that was rear-ended at a high rate of speed. He suffered numerous bulging disks in his spine, but over the course of the next few months he began developing bizarre cognitive symptoms that no one at the hospital could explain. One morning he got up for work and appeared intoxicated. He began hallucinating and I called the paramedics. As I waited he fell asleep. When they arrived, he awoke with no memory of the incident and didn?t believe me, even though our neighbor was present and told him otherwise. The paramedics left, because he was now alert and oriented. They hadn?t seen what I had. They did give us a referral to a local neuropsychologist, however, who did an extensive evaluation and diagnosed a minor traumatic brain injury. Because of the position of his body when the car was hit, his brain had literally smacked around inside of his skull. Months of therapy eventually ended most of the cognitive symptoms, but his lifelong chronic pain had begun. Seven years later, he had a lumbar fusion, arthroscopic surgery and received a diagnosis of non-Hodgkin?s lymphoma. A lifelong smoker since the age of eight, they also threw in a COPD diagnosis and told him he would be on oxygen in five years unless he quit smoking. For the remaining 15 years of his life, he only ever had oxygen if he was admitted to the hospital. Perhaps feeling falsely empowered by that fact, he refused to quit smoking. Later, he tried many times, but he just couldn?t get down past eight cigarettes per day. Having started smoking at such a young age, he hadn?t developed other coping skills. Combine that with a list as long as Santa?s of subsequent diagnoses, the stress was just too great for him. Six months later, he was finishing chemotherapy, declared cancer-free (his first tumor was encapsulated so it didn?t metastasize) and I was severely anemic, had developed an exacerbation of my childhood heart disease and was diagnosed with fibromyalgia. Neither of us were working or had an income for six more months. After his disability was approved, he was already feeling stronger and decided he was going to go back to school and earn a degree in Criminal Justice. He was commuting every day in addition to his studies, but he was doing very well both physically and academically. At nearly 40, he had never gone back to school since high school. Our son and I were so proud of him. He had one setback and had to take a leave of absence, but he eventually finished and after working in asset protection and as a youth care worker at a local children?s home, he followed his dream and pursued a career in law enforcement. The job market here was terrible at the time, so we talked it over and agreed he would expand his search to nationwide. Soon after, he was hired as a Deputy Sheriff for St. Tammany Parish, Louisiana, working in Corrections. The plan was for our son and I to stay in Pennsylvania until he was established. The training and testing was intense, and he was the oldest one in his class, but he made it through. Three months later, his blood pressure was so high he had to take a leave of absence and return home. He never went back. Instead, a flood of diagnoses followed for the next eight years that slowly wore him down to a shell of the man he once was. He remained physically strong until the end, though. He was not confined to bed rest as others in his position would be. He defied the odds so many times, I almost got used to it, and I developed a false sense of security that he would always do so. Nevertheless, we went to doctor after doctor, specialist after specialist, but the diagnoses, the surgeries, the therapies continued to almost no avail, because as soon as we had one thing under control, three more cropped up. We started with a visit to his oncologist who ordered a PET scan and my once cancer-free husband lit up like a Christmas tree from his neck through his entire torso. We were told, however, that all were too small to biopsy for chemotherapy, and since he had developed severe neuropathy in all four of his extremities, the doc wasn?t going to put him through chemo again at that point. Regular check-ups followed for years with no change. As his other conditions developed, the oncologist went on the back burner. He had so many doctor appointments that he just couldn?t handle any more. WIthin the first two years he was diagnosed with severe hypertension, diabetes, metabolic syndrome, severely high cholesterol (he was on three medications for that alone), bilateral knee instability (he fell all the time), in addition to the cancer and the COPD. Then in 2009, we learned that his spleen was grossly enlarged and harboring his platelets. Surgery was the only option. Given his COPD, general anesthesia was always a tricky bit for him. There was always the fear that he wouldn?t be able to breathe on his own afterward. We were sent to a highly recommended surgeon who had an excellent reputation. However, on the day of my husband?s surgery, he nicked the splenic artery and closed him up. How on earth no one noticed this is beyond me. Thank God an alert recovery room nurse saw the signs of internal bleeding and managed to call the surgeon back before he left for lunch. Lee had never had general anesthesia twice in a row before, and it didn?t go well. While the surgeon stopped the bleeding, Lee was now stuck on the ventilator. The nightmare had become reality. I really thought I was going to lose him that day. I had been waiting 11 hours when an understanding nurse came and got me, allowing me to slip into the recovery room to see him for the first time since six that morning. He was already swelling up and looked like he would never return to me, but I talked to him and told him how much I loved him while the silent tears streamed down my face. I know he heard me. They finally got him off the ventilator the next day and he spent the next two weeks in the hospital, the first week in ICU. Unbeknownst to me and despite my careful planning and speaking with everyone involved, his fentanyl pain patch had been removed for surgery and not reordered and replaced afterward. I found a man who was writhing in pain and repeatedly saying, ?I?m going to die, I?m going to die.? The only thing that would soothe him was a cool cloth on his head that I reapplied for hours. But he just kept getting worse and no one could tell me why. Finally, I figured it out, checked for the patch and saw it was gone. It took a couple more hours to get it ordered and applied and then several more after that until he had enough medication in his system to ease the pain and withdrawal symptoms. Long story short, he continued with all sorts of digestive symptoms that got progressively worse over the next two years. After repeated trips back to the surgeon with no answers, we sought out a second opinion and learned that he had two surgical hernias and part of his bowel fused to his stomach. That was the first time we ever considered suing someone, but the surgeon had died suddenly. Lee remembered he didn?t seem like himself on the day of surgery, said he was acting weird right before he was put under. Apparently, he had been sick for some time. In 2011, Lee underwent corrective surgery and miraculously, the new doc was able to repair everything including the bowel resection without the need for a colostomy. He was feeling better than he had in two years and things were looking up. But then my next dump of diagnoses fell and I was off my feet for ten months out of that year. We were like the blind leading the blind. Meanwhile, his chronic pain was getting worse and he was on an astronomical amount of narcotic pain medicine, to the point where he was so high, he was constantly losing his balance and falling, nodding off, and getting increasingly confused and disoriented. My husband was a pretty big guy, and I am a pretty small woman. Between that and my own health issues, I found myself unable to care for him as well as I thought I should be at times. I suggested visiting nurse, but he refused repeatedly. I also began suggesting we return to the oncologist for another check-up. His pain getting so much worse, and his complaints that his bones felt like they were breaking, cracking all the time with extreme pain, followed by a fractured hand and four disks completely gone, I was concerned that the cancer had spread to his bones. HIs father had died of bone cancer and his sister passed from brain cancer. Between his history and his family history, I was so afraid. But he repeatedly refused to see the oncologist, saying he didn?t think he could go through chemo again. He was even afraid to have his back operated on again, opting for a series of day surgery injections instead. The beginning of the end came four months before he died. He was standing in front of the refrigerator looking for something to eat and suddenly both of his knees gave out. He fell and fractured every bone in his right foot; the doctor said it looked like he had been in a car accident. She had never seen a fracture that severe from a simple fall. He had to go through a series of surgeries and casts to put his foot back together again and was non-weight bearing until the day he died. We have no bathroom on our first floor so it was a challenge. Worst of all, his fractured right foot was his ?good foot?; he had lost three toes and a quarter of his left foot in an industrial accident back in 1985. I begged him to go back to the oncologist. He developed ascites and his abdomen kept growing, but he still refused to go. He died in his sleep during the early morning hours of January 3. I had sat up with him until 3 a.m. that night. When I awoke at around 11 a.m., I found him cold and unresponsive. Oh, how I beat myself up over that! Why didn?t I see that this time was different, that his semi-conscious state was not the effect of the narcotics this time? Why didn?t I stay up ALL night with him? Why did he have to die alone, without me by his side to send him off? It wasn?t until today, as I was writing this, that I realized that had I done any of these things, his life may have been saved, but his agony prolonged just so he could go through another round of chemo and endure another lumbar fusion, neither of which he wanted. I was so used to him beating the odds and bouncing back that I really was shocked when he passed. Hiis physical strength sustained him all the way up to the end. We had just enjoyed an amazing holiday season, Christmas, our 27th wedding anniversary and New Year?s. He had a great week, which often happens before someone passes. As a former nurse, I would have seen it coming, but as a wife and best friend of 38 years, I couldn?t my hand in front of my face. The very thought of living without him, thrust me into a deep state of denial. Right after I found him, I had an out-of-body experience. I believe it happened, because I really felt I couldn?t live without him, but it wasn?t my time so I was sent back. But telling our only child, who at 23 considered his father to be his best friend, was even more arduous. I was still in shock when I woke him and told him. Oh, the pain of seeing him run downstairs, to hear him screaming, to see him struggle to move his father to the floor to perform CPR. I knew it was too late, but I had to let him do it. He needed to do it. That was a Saturday. On Sunday, I was hugging family and friends while they cried. By Monday, I was medicated. I was having severe panic attacks, which was not good given my heart disease. The first month was one big, awful, gut-wrenching pain as I walked around like a zombie who periodically burst into tears. Neither of us ate anything for over two days. We never even thought about it. I have just weaned off the Lorazepam for that, but remain on an increased dose of Abilify that is going to have to be increased again. Thankfully, it works with my Cymbalta for my fibromyalgia, so I am not on a high dose. I have surgeries of my own that have been put off for years that cannot wait any longer. And all I think about is I?ve never had a procedure done without him there to send me off and to be by my side after I return since I was six years old. We were just young teens when we first met. I can barely remember my life without him in it anymore. Yet, here I am, making little bits of progress three months out and never stopping for more than a few days of active grieving, because I have an 87-year-old mother who depends on me, and I have to fight for my own survival since there was no life insurance. Ironically, Lee finally agreed to take out policies just days before he died. Looking back, I think he knew he was leaving me soon. He just didn?t know how soon. And ever protective to the end, he didn?t tell me. Having been denied my own disability three times over the years for a laundry list of reasons, I?ve had to reapply in order to qualify for a widow?s pension since I am under age 60. Why? Why does the age matter, when one loses their sole source of income along with their beloved? My last denial was due to his income being too high, so they put me in this financial debacle. Now, I have to wait for months while I continue to work to establish myself as a freelance writer and live on a mere $136 per month from Section 8, which is intended for payment of utilities. Perhaps, it is a blessing that I have so much on my plate, that falling apart for more than a few minutes is not an option. The first month I was literally sick with grief and had to stop crying. My best friend, my soul mate, my beloved took a big piece of my already damaged heart with him. I am forever different: damaged, yet strengthened, scared, yet empowered, alone, yet feeling him with me at the most important times. He is still protecting me, watching over me, and I will still miss him with every fiber of my being, every single hour of every single day until we see each other again.

Justin, as a writer, I decided to work on a journal of sorts; it's actually the beginning of another book, loosely titled 'Diary of a Sandwich Widow'. ('Sandwich Widow' referring to those of us in the "sandwich generation") However, I don't find myself turning to that project daily, as I thought I would, because the validation from other wids is SO much more important to me right now. Journals don't talk back and neither do manuscripts until one receives that precious feedback from the readers. I've decided to continue with it, but it won't include daily entries, because some days I'm just not feeling it. Then again, that should make it more relatable to the reader. What's said when I do feel the need to write is so much more important than dutifully writing a daily note.

Functioning was definitely the deciding factor for me! I had been fighting depression for months before my husband died, and already beating myself up for not doing better. His passing just made things ten times worse. I had no desire to do anything at all and I do mean anything. So in my case, I definitely needed the anti-depressant. I agree that it won't take the sadness or even the panic away, but I am living my life now and a slowly adding more to it. Will I be dependent on this medication forever? I doubt it. I've used anti-depressants once before, when I was first suffering from fibromyalgia and no one seemed to know what was wrong. Once I had a diagnosis, the validation that was I was battling is real, I was able to discontinue them.

Thank you, Jess and Justin for your kind and wise words! Non-wids won't always understand my philosophy, but you get it, and the validation is sorely needed! The beauty of this board is that someone always relates to whatever stage of grief one is in. My sister-in-law is not a wid, but she has been instrumental in my decision to try to redefine these painful holiday/sadiversary days by simply being there - every Saturday. We have a few glasses of wine, cook, talk and yes, even laugh! While Saturdays still hurt, I no longer dread them. Instead, I have something new to look forward to, and it became a catalyst for the successful Valentine's Day experiment and the confidence to plan for tomorrow.

Did you ever notice that these painful little milestones often fall on a holiday or a day that was special to you and your beloved? When I began writing an inspirational blog in the fall of 2013, I had embraced the adversity in my life, past, present and future, because I had learned that amazing blessings often follow. My empathy and experience destined me to help others, first as a nurse, and later as a writer. Both jobs have helped me get out of my own head and experience joy again. But the hardest thing I have ever had to do was to apply that philosophy to losing my best friend of 38 years. We had just celebrated our 27th wedding anniversary a mere week before he died. But no one told me how crushing a blow this was going to be. No one could. One has to have been there, down in the dirt, scared, hopeless and so very fragile. How can any type of blessing come out of that? Since my husband was on disability for years, we used to say that the third of the month was our favorite day, because that was when he received his monthly benefit check. Now, the third of the month has become the worst memory of my life and Saturdays are my least favorite day of the week. Valentine's day was just days after he had been gone a month, and when does my three month sadiversary strike? On Good Friday! I had to find a way to keep my love alive, so I wrote a post about Valentine's Day being so much more than just a day for lovers. To my amazement it was very well received and it is going to be published as part of an anthology about love in the near future. That decision made me realize that I still have some sort of control over how I feel, and a tiny spark of hope was born inside of me. Tomorrow, I have plans to spend part of the day with a fellow wid and the rest of the day cooking for Easter Sunday, two things I always look forward to. I am hoping that by making these types of plans that I am protecting myself, just a little bit, from another panicked realization that my beloved is gone forever, that instead, I can reflect on how blessed I was to have him in my life, recount memories with laughter and cry tears of happiness. I'll let you know if it works!

My husband passed on a Saturday morning. Family members rallied around my son and I on Sunday. By Monday, my doctor ordered an anti-anxiety med, Lorazepam, for me that I found myself taking around the clock for the first month. It did help with the panic attacks, but my doctor wisely recognized that I couldn't go on taking it as much as I had been. At that point, he added a low dose of Abilify to work with the Cymbalta that I am on for management of fibromylagia pain. The following month he increased it slightly. I was able to get myself down to one Lorazepam a day, at bedtime to help me sleep. I still cannot sleep in our bed, but I can get through the night without any panic attacks. However, as I am coming up on my three month sadiversary tomorrow, I have found it's not working as well as it was before. I could easily have the dose of Abilify increased again without concern, but I am concerned that I have to stop somewhere. I have not had any negative side effects with my current therapy nor have I felt numb. In fact, the Abilify worked exactly as advertised, giving me a boost of energy and motivation to get through the day. My doctor has also recommended grief counseling, but so far I'm not feeling it. Emotionally, I have a pretty good support system, and I've had a bad experience in counseling before, so I am hesitant. At the end of the day, the choice to take anti-anxiety or antidepressant meds is a unique and personal one. If you have a good relationship with a doctor you trust, it's easier to make an informed decision. And while you can't just stop the drug without weaning down, starting out with the lowest dose can help make that later process easier. If you are concerned about drug interactions or side effects, WebMD is a great resource. You can look up any drug and get as much info as you want, even what the recommended dose is to start. I use it as an objective second opinion.

Hi Wheelerswife, Thank you for sharing such an insightful post. The above really jumped out at me. While I can't begin to know the depth of your pain by being widowed twice, I do feel as though I sometimes belong in the six to 12 month group, that I'm further out. As I said to swilson, I haven't had much time to grieve, so after the first month, I began stuffing much of it somewhere inside. The day after he died, I held others as they cried. Five days out, and I was taking my elderly mother out and helping her handle all of her personal business. My 23-year-old son was so worried about me, asking me repeatedly day after day if I was alright. Of course, I'm alright - I'm Mom - I have to be. Oh, we grieved together and I wept openly for that first month or so, but it was killing him. I am working on grieving in private, but I'm not doing well crying on command. Yet, despite it all, like you, I know I will get through this. Hugs!

Thank you, Swilson. I am in a position where it is very hard to cut myself some slack. My mother is 87 and I'm all she's got. She is still living independently, but in the past year she has needed more help. As her POA, I've been handling all her paperwork in addition to managing her medical care. I'm also scrambling to establish myself as a freelance writer. I published my first book back in 2013, but I haven't made much money from it. My husband's disability was our sole source of support and mine is pending, so I have no income right now. He didn't have life insurance; he finally agreed to take out a policy and then passed the day after he received his monthly check. As a result, I haven't had much time to grieve and my health issues are such that after a month of walking about like the living dead, I simply had to stop crying. Now, it's just all stuffed in there somewhere as I soldier on. So, it's a challenge to take care of me, but I hear you and I thank you. Hugs!

I really appreciated the opportunity to read all of your responses. It helps. I am three months out on Friday, the 3rd, Good Friday. Sometimes I feel I am at the precipice of healing, but most of the time I feel scared to death. I am less scared of him being gone than I am of grieving, however. The depth of my grieving was making me sick. I feel him with me, but it's not the same. Although in some ways, it is more powerful. Most of all, I miss my best friend of 38 years; we just celebrated 27 years of marriage a week before he died. He'd been sick a long time, eight years, but I never saw it coming. I couldn't or wouldn't, I'm not sure which. Maybe both. Thanks for listening.

Thanks, all.

Thank you so much, Andy'sWife. Do you ever see a post and say to yourself, "I should reply to that, because I am so there," but then you feel so depressed that you end up saying, "Maybe later." I am feeling that way right now, which isn't like me at all.

What a great idea! So many beautiful pictures of love in bloom! I wish I had a scanner, so I could post our wedding picture as well. Instead, I am posting the very last picture that was taken of my husband and I together, on New Year's Eve, just three days before he passed.

I agree with Andy'sWife; writing it all out is great therapy and also a way to look back and realize that you've really thought this out. It sounds like you've done that thinking, and I'm sure you will make the decision that is right for you and your family. Remember, you have to take care of yourself before you can take care of anyone else, and if this potential move is going to help you do that, then by all means go with it! A quote from A. A. Milne comes to mind, "Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think." You will be in my prayers.

Wow, what a wonderful idea! I'm looking forward to checking it out - thank you so much for explaining everything.