Hello everyone. I hope that if you are reading this from a similar health situation that you haven’t had these types of problems. If you have, I pray that they do not last indefinitely, that they are not all encompassing, and/or that you have fantastic surrogates!
I first began having back problems in April 04. My daughter was not quite two and I cared for her all day at home. Also, we had recently moved to the UK. My spine had degenerative issues for the next few years while the docs tried everything in the book to avoid surgery. So I endured all kinds of epidural steroid injections, facet joint injections, physical therapy, a denervation, what have you for a couple of years. In January 07 it was decided that surgery was the only option. So, we got put on the schedule and in May 07, at 24 years old, I had a wide decompressive laminectomy at L4/L5. Initially, I was much improved, my mobility was better as was my pain, so long as I didn’t do anything. Then my pain settled out into about what it is today. I wasn’t cured per se, but it was no longer getting worse either. Jan 08 we moved into our new home here in the US. I had been having a few new symtoms on and off for the last year or so, but didn’t think too much of it bc it would come and go. After we moved that was no longer the case.
Throughout 08 and 09, I began to experience neuropathic symptoms like tingling, numbness, radiculopathy, and “brain fog.” I also started to exp Reynaud’s in the right conditions, one of the worst for me is the supermarket. But what really got our attention was that every time I would leave the house I would come down with some kind of bug for a few days. It just seemed like a 24 hr virus, except it lasted around 72 hours. I had fever, sweats, spasms, stomach upset, loose bowels, dizziness, eczema flares, etc. Eventually it did not matter if I left the house or not, a couple of times each month, I was going down.
In 2010 these flares or episodes continued to get longer and the symptoms ecae more severe. In this time, from 2008-2010, I saw three neurologists, two rheumatologists, an MS specialist, and a few different general practitioners and internal med docs. In 2010 and 2011, I became thinner than I had ever been in my adult life coming in around 120. My ideal weight that keeps me both thin and soft is 130-135. Anything over 135 and start to get luscious (LOL), and anything under about 125 and I begin to look like a coke-head. Of course everyone but my husband and I thought I looked disgustingly skinny (let’s conveniently forget why that is…) but my concern wasn’t that I was that thin, but that I couldn’t keep the weight on. I ended up eating an insanely high calorie diet to try to not waste away. Then one day in November I started gaining weight.
In 2012 we moved into a one story house in hopes that it would help my health, and it seemed to, but shortly after my stress levels went through the roof. I struggled through the summer, but was more down than up in the winter. For basically all of this time my illness wasn’t even acknowledged by my family. My husband and kids, sure. But there were no checking on you calls from my parents or grandparents, nor aunts and uncles, not even siblings. I knew that the family we left when we went to the UK was not the one we returned to, but there were some things I just was not prepared for. I had believed that we had this great family who stood by each other no matter what. Well, I’m here to say ten years of pain,suffering, and illness apparently trump that. So meanwhile while my sister got check up calls when she has the sniffles, I’m so sick I’m being advised to consider the Mayo, but no one is calling me. At first I got excuses about how they didn’t want to wake me, and other asinine tales. Christmas 2012 put a stop to that very quickly.
I had made plans to do about a 10 day visit with our family. It is a long drive, but I had been doing it twice a year, once at Fourth of July and once at Christmas. As I was too ill to go that summer, I really wanted to make it for Christmas. I knew I was too sick when thee time came. I was so weak that morning that I fell in the shower. But I wanted to go. So we went. It was a horrible trip, all I wanted was a good night’s sleep with my husband, quiet, and a cool room. None of these were to happen. Of course, as holidays go, especially when you feel poorly, things aren’t so great anyway. I had decided to leave early, but an issue with a family member basically made me feel unwelcome. All of these factors added up to us leaving a little abruptly. I didn’t really supply an explanation. I found it shocking how angry everyone was at me. So here I am so sick I can’t stand up, but you are all going to be angry for us leaving? That should be enough reason in itself to go without any reparations. But they were angry. My grandmother didn’t speak to me for about a month. She also sent a few nasty messages to me, which I chose not to answer. I was really shocked at her opinion of my circumstances and her judgement of my decisions. These revelations have really set the tone for our relationship since, which greatly disappoints me.
I have always been rather close to my grandmother as neither of parents were very available to me. I can count on one hand all of the times both of my parents combined have told me they loved me or said they were proud of me. I make no claims to be a perfect person or anything. I have a bad habit of speaking my mind and telling the truth. But overall, i was a decent kid, honor roll, graduated high school with honors, got married and had a baby. We never moved in with a relative, always paid our own bills, never needed help from parents/family. What we did want/need was their support, and oh encouragement sure would be great. I guess that is asking too much. After Christmas 2012, my grandmother made no bones about how I was “pushing away everyone who loved me.” When I read that all I could think of was “WHO??” I only saw any of our family when we travelled to their location. I tried to speak to my grandmother regularly but it was difficult to reach her, and the calls were never that long as she always had something more important to tend to. So if most everyone I only saw once or twice a year and didn’t speak to at all in between who all was I pushing away? The other bit was How? By not coming the previous summer? By leaving early? For not calling every day? I just can’t get my head around it. How is being to sick to talk or visit pushing loved ones away? If my daughter or granddaughter were sick like I am, confined to bed for months at a time, I would so be there, not just in a supporting role, I would physically be there! So it is extremely upsetting to me that none of these people who allegedly love me even think to call and see how I am doing.
I pray that this is not your situation. I pray that your families are ready to pick up the sword and fight illness right alongside you. I pray that your mother, father, siblings, grandparents, friends, church, everyone, will do everything in their power to help you and your family get through these trying times.
On the flip side, my husband and best friends have been fantastic! I wouldn’t be alive right now if it weren’t for them. Many men would leave a woman as sick as I am, especially for so long and with no end in sight. My husband has been with me each step of the way. Helping me to the restroom, making my meals, helping me to bathe, plus working a full time job, taking care of two kids, a dog, and five chickens, along with taking sick days to take me to doctor’s offices, and holding when I cry, praying with me when I think I cant take anymore. And my sweet friends have made great sacrifices to visit from long distances, to make me laugh, to help me feel loved, to have hope, to not give up, and to never let this illness have my identity.
Purify 