I have a medical condition which is called gastro paresis; this is the stomach inability to empty at a normal rate. This condition can be triggered by many things I assume, but in my case it was a stomach virus. This has happen to me many times in my life, but the last time was late January of this year when I contracted a nasty bug from my nephew. The symptoms are nausea, vomiting and stomach pain. The nausea can be so severe it leaves me praying for mercy; there are no predictable times when it can hit, but eating is not something high on my list of things to do. Liquids move through the stomach much faster than solids and this can decrease the nausea. Anti nausea medications can provide some relief, but the problem is the stomachs inability to empty at an acceptable rate and this is the source of the severe nausea and vomiting. If I had an evening meal, the nausea is at its worst in the mornings. Needless to say, I have been trying to avoid food and especially in the evenings and if it is not the consistency of baby food I just will not eat it. I have loss so much weight and I have to grab my skinny jeans out of the closet. There are those who have normal fitting clothes and larger clothes and I have normal fitting clothes and skinny clothes. One of the few medications used to treat this type of condition, my body cannot tolerate and the side effects are as bad as the illness. This is where I stop being that good little soldier; I am tired of being sick, I hate the fact I did nothing to make this happen and do I not have enough to cope with that I did not ask for? Life is not fare and I have had more than my share of shit—and some of other peoples. I am not shoving my emotions down and I am going to cry until my role of toilet paper run out. I can truthfully say I am fed up with this body that was given to me and I would like an exchange for one that does not have so many problems. All of my life, I have done the right things; I did not smoke, and I exercise and did not drink and brushed my teeth after meals, but all of this did nothing for me. How much does one have to endure, before enough is enough? Over the last several months, I have been reaching down inside and calling on my emotional reserves and I am close to tapped out. There was a time not so long ago when I would share my true emotional pain and frustration with very few people if anyone and those days are over. Therefore, it has been necessary for me to reach out to friends and family for needed emotional reserves and this is a very good thing. I am beyond anger—I think this is called rage. I am sadder than sad and I am scared and emotionally exhausted. Yes, I am still deaf-blind, but the migraines have not been as frequent and this is a blessing.

Linnette

I received a comment from one of my post from a parent who is living, loving and struggling with her adolescent deaf-blind daughter; She thank me for being so candid while posting to my Blog and also I believe giving her additional insight into the world of this deaf-blind woman. As I stated in an earlier post, I was prompted by a concern person last summer to start a Blog and this suggestion 9 months later I still appreciate. I get such satisfaction out of Blogging about the trials and tribulation of being a deaf-blind woman; it provides me with a healthy outlet and allows for anyone else who stumble my way to read or comment at their leisure. Occasionally, I will read over some of my prior post and I never even in my wildest dreams believed I had so much to say and that anyone would even read my ramblings.

Linnette

Lately I have been feeling sad and this is not a bad thing, because I have a lot to be sad about. The problem was never the sadness, but my inability to acknowledge it deal with it and move it on and occasionally let it come to visit, but never stay overnight. However, I understand this now and I am giving myself time to grieve for so many things I have lost over my 46 years, but was unable to tap into the emotion. There are times when it feels quite strange, because I still remember being that good little emotionally stunted soldier, but on the other hand, it feels so very good to have a good cry and a good cry and a good cry with loving and caring friends. There is something so emotionally freeing about experiencing ones true emotions and acknowledging them as a valid part as I did with the deaf-blindness and the migraines and a few other physical ailments, but unable to do with the emotional pain until now. I believe this emotional growth is necessary, because it is healthy and it will allow me to free up energy to better manage the stressors that are inherently apart of deaf-blindness and anything else that just might be put onto my overflowing plate. I truly believed at one time, by holding my emotions in check-- the good and bad ones and remaining contained I would not waste valuable emotional resources—how wrong I was.

Linnette

There are times when I wonder if the hand of fate will put more on my plate than I can handle; deaf-blindness is such a vulnerable condition and frightening to say the least. As a deaf-blind woman, I have to be very careful and take the necessary precautions when living my life in a large dangerous city. I can take little for granted; I must always lock my door and not assume every friendly voice is a friend. Living with deaf-blindness is such an all encompassing condition and something as simple as a head cold can put you off of your feed for a couple of days. The energy required to live as a deaf-blind person is enormous and there are times when there will be energy for nothing else other than putting one foot in front of the other and just getting through the day. Lately, I have given myself permission to ponder my life as a deaf-blind woman on a much deeper level and I am telling you it is not an easy thing to do. You have to utilize enormous emotional resources in order not to have anxiety as a constant companion. In earlier post, I wrote about my need to exercise, but specifically I walk and walk to manage my stress and this does me well, because it prepares me for the daily stresses living as a deaf-blind woman. There are times when I think about staying at home and greatly limiting my interaction to the outside world to keep the stress to a minimum, but this is absurd, because I refuse to restrict my life more than fate has done so and I enjoy the companionship of most people and I love going outdoors.

I first attended the deaf-blind camp here in Maryland in June 2008 for one sweaty and hot and fun filled week. I have learned so much about myself since that first day at deaf-blind camp. I know I am not alone and no matter how bad I think my situation is, it could be much more severe. This does not mean I am not acknowledging the pain I feel as it relates to my own deaf-blindness, because I am learning my pain is as difficult and sad as the next deaf-blind person. The Linnette of yesterday, who would just suck it up and make her belly hurt is gone and this is a very good thing. There was a time in my life, when I took emotional blow after emotional blow and never blinked an eye. When the doctors told my parents when I was in elementary school that I would probably be totally blind by age 12, I handled it like a little soldier; When I was teased by the neighborhood kids, because I could no longer run and play without running into a tree, I took it like a little soldier; when I was told my hearing would continue to worsen—you got it, I took it like a little soldier. However, that little emotionally stunted soldier has gone AWOL. I am going to acknowledge my pain and cry for all of my losses and I will still get up in the mornings and put on my Nikes and thank the powers to be for another opportunity to experience another glorious day. Deaf-blind camp is scheduled to begin June 7, 2009 and I have been part of the planning process from beginning to this point; there were days when my belly hurt, but I was at the planning meeting; there were days when my head hurt, but I was at the planning meeting and it is my intention to keep attending the meetings. The deaf-blind camp here in Maryland means so very much to me and so many other deaf-blind people; I do not believe I could find any worthier cause to be part of. I attend the meetings for myself, but I participate in the fundraisers and stuff envelopments for the good of the camp and all the other deaf-blind adults who look forward to that wonderful week of fun, freedom and fellowship.

Linnette

There was a time in my not too distant past when I thought crying or showing pain was a sign of weakness; how wrong and foolish I was. Life would stack on more and more and I just kept taking it in and sucking it down and it became a habit and I am just learning how to let the pain show and let the tears flow without shame. I cry for that little girl who was unable to see well enough to run and play with her siblings, I cry for that adolescent who was unable to get a driver’s license and I cry for this deaf-blind woman who had to work and fight so very hard in order to overcome enormous obstacles just to sit and write this post. I am strong and this I know, but I am human and I feel pain. I am not the same person who started Blogging last July from the prompting from a concerned person and this is a very good thing. I believe I am stronger—not because I am unable to show emotions, but just the opposite; life dealt me a lousy hand and this pisses me off; I played by the rules and still got zapped on multiple occasions and this leaves me angry. However, I am neither bitter nor naive, I know there will be more pain and many more tears, but I am stronger now and able to experience and share my emotions.

Linnette

All of my life I have been told I was very strong; recently I was told I could handle just about anything and this left me angry. I had to take a look at myself and wonder what message I had been conveying to others. Yes, I am strong, but I cannot handle anything. I had my days when the stress of coping as a deaf-blind woman leaves me screaming inside my head and asking the question “why me”? There are times when I know I have been dealt a bad hand and resent that I have to play it and cannot get another one and start over. There are days I pray for just a little reprieve in order that I can take a deep breath, build up my emotional reserves before starting again. However, this I know is not realistic, because there is no vacation from deaf-blindness and the other not so pleasant things life throw at us. However, I can hope, because without hope, there would be no need to get up in the morning and take my guide dog for a walk and pick up his unmentionables.



Linnette

I am in the process of choosing the perfect hearing aids and the task has left my head spinning. I thought I had decided on the Phonak brand, but there are so many others, but I think I will stay with Phonak. I had my hearing tested today and there has been no significant change since last October and this is a very good thing. Unfortunately, I am still faced with the dilemma of having severe asymmetrical hearing loss and trying to get balance between the two aids will be a true challenge. I am not complaining, because I feel fortunate to have some hearing even though it is lopsided and I have no ability to localize sounds. Once I decide on a brand and then pick out aids, it will be necessary to choose a color. I know I do not want skin tone, but maybe blue or green for my aids; I could have green for the left ear and blue for the right ear.

Linnette

I stumbled over an older gentleman who is attempting to cope with his total blindness and gradual hearing loss. I felt ill equipped to answer his questions even though I am in a similar situation. He had so many questions about deaf blindness and the resources out there for people like us. How do I talk about the loneliness and the ongoing effort to get people to understand the reality of deaf-blindness in which we live every day? I had an interesting encounter with a professional recently; the person after meeting me apologized for my disabilities and I thought she was going to cry. I can live somewhat in the world of denial, but when I hear the sadness in others voices for my situation it makes me so very sad. However, I will convey my interpretation of deaf-blindness to the older gentleman and try to answer his questions to the best of my ability and guide him toward resources for and about deaf-blindness as was done for me. The journey traveled by a deaf-blind person from beginning to end have to be the loneliest journey in the world and meeting others along the way you enjoy and like is truly a gift.

Linnette

I am about to receive my new Braille display in about several weeks and I am excited. This display will be a welcome addition to my current technology and it is desperately needed. When I was in college, I had to depend on readers or text books on cassette which rarely match the addition the instructor was using at the time. There was no internet and very little accessible technology for the blind. I remember feeling so cut off from information and at the mercy of others to provide me with most printed news and events, because it was difficult to obtain the information I was seeking in Braille. I never thought it could get this good; I am able to download my news papers and listen to them or read them on my braillenot. I have the option of scanning my mail in and paying my bills on line. When I was introduced to scanning software years ago on my work computer, I cried; my first introduction to refreshable Braille brought tears to my eyes. I have been asked on many occasions, how I can keep such an upbeat attitude and not spend my days sad and depressed; I am not a Pollyanna and I realize the seriousness of my particular situation. However, I have hope and believe as long as I am a live, there is the possibility technology will improve and increase the quality of my life as a deaf-blind woman.

Linnette