Light At the End of a Very Long Tunnel- Amen!
Friday, December 08, 2017
It all started on Valentine's Day earlier this year and it is just now wrapping up the end of the first week of December. It started out with the 'usual' health issue that I had been dealing with: excessive bleeding. My husband and I were watching a marathon of 'Downton Abbey" and I suddenly felt what I had become accustomed to over the past ten years. As soon as I stood up to check things out, I passed a large bloodied mass and then bled non-stop. In the past 18 months these times had become more and more infrequent (a sigh of relief on my part) but they were still something that I had to be on guard for. I have had this happen in public and that is so humiliating that it has definitely curtailed a lot of attending social events because of.... this uncertainty.
As I have mentioned in the past, I did not have health insurance from 2004-mid 2016 and with both of us unemployed during the period of 2009-2015 (my husband was reinstated as a W-2 employee with his former employer). I was accepted in summer of 2014 for Social Security Disability Insurance on permanent disability but didn't qualify for Medicare health insurance until mid-2016. So, I did not go to a doctor for a very long time. I basically 'tolerated' events like that above and just hoped that it would 'go away' eventually. I/we did look into Medicaid and other low income insurance options but we made 'too much money'. When Obamacare finally was put into place we still couldn't afford to go to the doctor because in order to get subsidies we had to take a higher kind of insurance and we could barely afford the monthly premiums. Our annual deductible was more than I have ever spent on doctor's and so we didn't go then.
In March I decided to change my food plan and reduce the amount of carbs I was eating. I realize that I needed to eat more vegetables and drink more water and at that time I did not. So, the natural consequence is I became severely constipated. At the time the leader of the SP team that I belonged to review what I was eating and since I wasn't eating as low of carbs as the rest of the team (many followed LCHF and the ketone diet) she felt it wasn't the diet but I have no other reason to not believe it wasn't--lower or not. It took me almost 4 months to get my bowels straightened out and even then they were still touchy. I went through horrific lower bowel pain in evacuating. It left me with a really touchy digestive system in terms of what would and wouldn't cause me distress. By fall, with the added stress over finances and health, I also developed a more severe case of IBS (irritable bowel syndrome) and now I can not eat most of the foods I used to eat with no incidence.
Things had a plateau in the months of June and July and I was eagerly planning some twosome getaways for my husband and I. We had a short trip to the North Georgia mountains in early June. It was the first time we could actually afford to take a short trip and it was wonderful. We have struggled financially for the majority of our 15 year marriage and this was a real boost to our 'battle fatigue'. Well, this 'honeymoon phase' lasted about 6 weeks. My husband comes from a very large family which get together at least once a year for a huge family reunion which is held on his parent's farm. I have not gone in recent years because it is too difficult for me to navigate the Atlanta airport (busiest in the world) which is 8 miles of a lot of twists and turns. I can barely walk 20 ft. and that is laborious with a cane. So, I have been removed from these 'memory making' trips.
Quite suddenly, my husband Paul got a phone call from his brother, the oldest in the family, and invited us to his surprise 40th wedding anniversary. One of his daughters had planned this in secret and told them a week before the party which was also going to be held in the home town they all grew up in. I agreed to cover the plane ticket with one of my new credit cards (my husband does not having credit although I have worked hard to have my own in my own name) but I knew that I would not be able to go. I really felt left out this time. It also meant that the trip we had planned for Labor Day weekend had to be axed since that was the last of his vacation days. It was with some disappointment that I saw my chance of another short trip vanish. My husband was thrilled but I was somewhat resentful (an emotion that I don't usually have) because had this niece contacted us sooner (and it could have been done in secrecy) we could have both gone but driven instead but that didn't happen. I felt like a person who didn't count and was invisible. I know she didn't probably know the extent of my disability if at all. However, I still felt that I could have seen my sister and my favorite great niece and nephew in the same trip.
Within a couple of weeks we had three unexpected out of pocket expenses that threw my careful budgeting out the window. That is what happens when you have every penny and nickel accounted for and everything needs to go as planned. It troubled me. I spent August trying to getting caught up and on edge as well. Without missing a beat I was troubled more and more about continual health issues which all seemed unrelated. I had wanted to cease reacting to life's problems by turning to food and what I was discovering that underneath that tendency was a lot of anxiety and a very strong case of feeing isolated and lonely. I tried to keep upbeat about all of this but it was clearly dragging me down and I realized that I was resisting what was happening.
It all came to a head the early part of September when we had the remnants of the hurricanes which had devastated Florida. (I live in Georgia). We had 50-60 mph winds which is usually responsible for trees falling and power outages. By this time I was clearly getting more and more agitated. I did wonder at the time if this was chemical and organic and possibly related to me on the cusp of starting menopause. My bleeding including the sudden 'mini gushers" (which is what I called them) were tapering off. I seemed more irritable and I assumed that was because I wasn't being the jolly fat woman eating her emotions. I noted it but I really didn't know what to do about it.
Around September 8th or so (about 3 months today) I had one of the worse panic attacks that I have ever had. I was sobbing and shaking and I was terrified during the storm. Yes, it did seem like I was competing with the storm outside but I honestly don't know what overcame me except I could feel and taste fear in a way that terrified me. After I managed to calm down I was very fearful from then on. I couldn't seem to shake it. I am still recovering from that day... one day at a time.
From that time on I came down with what I thought was seasonal allergies only these were the worse that I had ever had. I hate to admit this but I had been depressed since my Dad died (and probably before that) in 2015 and I had allowed things to slowly unravel around me. I lost interest in a lot of things although some things I could still do. My housekeeping started to get worse and worse simply because I had injured my back in the fall of 2016 and had spent two months almost bed ridden before I was able to get back to being more active.
I was involved in SP challenges and I even lost 15 lbs. then regained some and then lost that and so on. I think my way of losing though was not healthy and I barely did what I needed to do in terms of being active. I just didn't feel like it and after injuring my back I had another 'reason' not to be too active. I decided to take a hiatus from the challenges and initially I was relieved but then I later realized that this was my one contact with the rest of the outside world and that I was also cutting myself off from people who knew me and understood what and who I was (even if they may not have known the full extent of some of my inner demons).
So, September turned into October and then November. I had a persistent cough that had lingered for 8 weeks. I was also concerned that when I fell in my apartment and laid flat on my lower back a month ago that I was taking increasing more and more NSAIDs for the pain and I was really struggling between the two. I wasn't sleeping---sometimes only 1 hour and once I hadn't slept in 32 hours. I became increasingly anxious. I developed a fear of sleeping at night so I would push to stay awake watching t.v. and playing online computer games so I could finally go to bed when daylight became apparent.
I feel that feeling so helpless between my injured back and the fatigue from being so sick so long with the upper respiratory illness that I just started to think that my life was out of control and that I was desperate to right itself. I tried to build up my stamina and strength but with hardly any appetite and the fact that I have been anemic at least a year (confirmed by my physical in fall 2016) I just couldn't get a leg up on anything so I could see any discernable improvement. I did try herbal supplements and they were not strong enough I feel to really make a dent in my physical symptoms.
I asked my husband if I could sleep alone and that was difficult for me to do but I knew that I needed sleep desperately and I had to find some way to feel a sense of control (so sleeping aids were out) as well as feeling okay prior to sleeping. I have been working on this one 'problem' for a good two months. What has allowed me to sleep is praying a rosary before I go to bed, praying to St. Jude for relief from my anxiety, having some background meditation music on (very low) as well as sleeping with a light on. I have had to become accustomed to this new ritual and feel embarrassed about it. However it has slowly allowed me to sleep although I wake hourly because of the back, hip and knee pain. Not perfect but I do get some rest.
The last Saturday of November was the apex of all of this. I did not see it coming. I awoke anxious and I tried the 'usual' which had worked before but did not that day. In my desperation I called a mental health crisis line. The woman on the other end of the phone was so calm that in spite of my sobbing and saying "I am afraid" she convinced me to go to the ER for my anxiety. I was terrified. The last time I was in the ER was over 20 years ago. On the way there I said to my husband Paul, ' you know, this is going to cost a lot'. We were to afraid to discuss it any further. I knew I needed help but I feared what would happen next.
The ER staff treated me like a hostile patient and it took them to be stern to get me to settle down and comply with most of their requests. I asked for something for my anxiety and what seemed like forever a pill came and it only took about 10 minutes and my anxiety was cut by 75%. I am not a person who uses drugs but I recognized the immediate benefit of this. Having that level of anxiety is excruciating. My back x-ray revealed a herniated disc and popped vertebrae. I had not had time to take my NSAIDs so I was also in a lot of physical pain while I was waiting for them to finally give me something for my back. My chest x-ray revealed pneumonia as well as a UTI and, not surprising, hypertension. I was given the strongest antibiotic for the pneumonia and 9 anti-anxiety pills.
I agreed to speak to a mental health intake person who asked me questions that I thought were absurd: what was my favorite movie and book? As I told my husband later, all I could think of was I had missed my pain pills for my back and I was in a lot of discomfort. The following Monday on very little sleep and with my husband risking the security of his job he took me to a behavioral health clinic. I sobbed softly the whole time I was there. I felt weak and broken. I was like an injured bird with a broken wing and feeling protective of what little strength I had left to protect myself in this world. I knew something was wrong but I wasn't sure what it was.
We were there nearly three hours. My husband's supervisor was not happy but he rearranged some of my husband's workload to later in the day. I was fearful of being alone but I knew (the practical side of me) that he had to do this or jeopardize the security of this job. One of the reasons why being alone acutely became an issue is that I had to face that over the past several years my husband has built a very satisfying life separate from me and that I had 'encouraged it'. I used to say that 'I am the one who is disabled and just because I can't do things doesn't mean you should sit home and always hold my hand.' I still mean that but it just seemed like my husband, who I know clearly is devoted to me and my well being by his actions, was checking out and I was sitting on the sidelines. I realized that I needed more of his company and he suddenly realized just how much his job (he is on the road nearly 10-12 hours a day) as well as his outside community activities that he was away 3-4 nights a week as well. He is very satisfied but, sadly, I am not. I don't feel it is his responsibility to make me happy but I do see that I had neglected myself and not realized. I was home alone but not having as much fun as Kevin in the movie was having.
I brought this all up and although my husband, Paul, had a look of being 'convicted' when I asked him to be home with me on especially anxious moments he did without calculating the risk he might have with his other commitments. During our 15 year marriage we had developed clearly defined roles within our marriage. I handled the things he didn't like to handle which was mostly financial including doing our income taxes (I have done this professionally as well) but socially I have been more withdrawn in the past couple of years. It wasn't all his 'fault'. I too had increasingly turned down events (often at the last minute) simply because I didn't 'feel well' or couldn't make the effort to get dressed. I had become the wife spoken of but rarely seen. Neither of us (and we both have had a history of depression in the distant past) recognized the symptoms either that I had been depressed for several years.
That trip to the ER was a real wake up call for me and it was only almost three weeks ago.
I admitted defeat to how I have been managing my life. I used up those anti-anxiety pills quickly (I could take 3 a day) and then as I tried to get a prescription from other sources and couldn't I realized that it was something that I was going to have to deal with on my own until I see a psychiatrist in early January. I have had two tests as well since that time. Realizing that my allergies somehow progressed to bacterial pneumonia startled me enough to lean on my property management to do some work on our aging HVAC system.
They told me they got approval for replacing the old worn out and repaired many times furnace and a/c unit. However, I had a panic attack when the installer was here. I have felt so claustrophobic in my apartment since I haven't been out of here in six weeks prior to going to the ER. The installation was noisy and smelly and messy and that was more than my tender nerves could handle. I called my husband tearfully and told him I was in a 'bad way' and then I just tried to do some deep breathing and go in my bedroom and prayed a rosary. I got through it. However, there were some problems that needed to be ironed out and so once again someone came again and besides me having to be assertive about finishing the job I also wanted some black mold removed as a result of the a/c leaking. I stressed my health and, well, that was a very difficult and anxious situation for me to be in. It is hard to stand up for myself to being with without having increased anxiety besides.
Finally, I got an offer to refinance a loan that we have had for a couple of years which was taken out for car repairs but was when I was first starting out repairing my credit as well so the interest rates reflected that. The monthly payment was killing us and I had to really bite my tongue not to kick myself although I still did once in a while. This was a good approval odds for me but I really had to jump through a lot of hoops and provide a lot of financial documents. That alone is stressful (I hope it is for others) but when the woman I was working with demanded even more detail on the morning of the appointment I 'snapped'. I called up my husband and told him tearfully that I was having another panic attack and I just couldn't make it.
I called them and told them (it was the truth) that I had a very horrible night with my back (which I had) and that I was in too much pain to make the trip there (it was about an hour away and in heavy traffic which also makes me stressed out). I asked them if I could withdraw my name (given the circumstances) and if my husband could proceed without me. I could tell the woman was angry but she agreed. We got the loan and the check went directly to the other loan company. We are saving $200 a month on our monthly payment and the interest rate is much more reasonable as well.
I will say that I had to remind myself that I had done all of the grunt work so all my husband was doing was showing up with what was asked of us and sign the papers. I was the 'mouthpiece' as I have often been in the past but they accepted how this worked out and they were happy to approve the loan. So, after this very long tale I have told of how things are and have been where am I now?
I finally feel a sense of hope again. My back is now more sore than in acute pain (which was the aggravated nerves which is horrible pain) and I can now (very carefully) load the dishwasher, bathe myself and even make myself lunch. I am sleeping although including last night I awoke every hour because of some kind of pain. I have been able to keep the 'family finances' going on schedule and pay on time. I am able to watch some favorite old time Christmas movies and enjoy them. I ordered a lumbar sacroiliac support belt to wear under my clothes which the doctor recommends. I had a weak back going into this and the recovery will take time.
This type of pneumonia was unusual in that I also developed open sores all over my body. They are healing. I lost 13 lbs. as a result of having open sores inside my mouth. It took weeks for those to heal with special mouth rinse and mostly waiting it out. I credit Glucerna with giving me the nutrients that I needed during that time but I have had so much pudding and applesauce that I can barely stand to look at them. LOL. My stomach is still quite sensitive from all of the pain meds as well as the huge antibiotics that I took for 8 days so I am 'forced' to eat much smaller portions. I still don't have much of an appetite.
On a side note, the bleeding appears to have ceased as of the week before Halloween. However, now a month later I am starting to experience hot flashes. They are mild so far but I sure didn't want this right now either. LOL
I joined a team challenge with one of the first teams that I joined when rejoining SP back in 2015. I felt a wonderful warm welcome back and I am so glad that I went against my own reservations of whether I was up to it. It has breathed new life in what was a 10 month nightmare.
Am I okay? As the intake woman said to me when I was at the behavioral health clinic, " You didn't get this way overnight and you won't get better overnight." However, I am in a better way than I have been in a long time. I have learned that I need my support team and I should not have cut myself off from them. I also know that I was neglecting my own health (not intentionally but because of being depressed and not either recognizing the symptoms or denying them (I am not sure which). So, those old games that I used to play. I think they are almost gone. Now, I drink water because it keeps me from getting any more respiratory illnesses (the ER doctor told me keep doing that so the pneumonia won't return). I can't eat most of my old binge foods because they make me physically ill. I have developed lactose intolerance so no dairy from now on. I purged my refrigerator the other day and then ordered new groceries based on my IBS low residue diet.
There will be a time when I will see this year in a more clear way but for now I am feeling better and more my old self except I can't return to how I used to be. That is a good thing and I now recognize that no one is trying to make life more difficult than it need be except ME.
Thank you for reading this long blog entry but I needed to put this whole event on paper.