As the list of my illnesses continue to grow, I question the motivation behind all of these test, I am a very compliant patient, but there comes time when you say Enough is Enough, After having the smart pill test and diagnosed with gastroporesis. My pain continues to hurt so bad on my rib cage due to the gastritis and esophagitis and the pain is radiating through my ribs so bad I thought I was having a heart attack. So I go get checked. No Heart attack thank god, But the ER Doctor said to me you keep coming in and we can’t help you why isn’t anybody getting down to the bottom of this. So with that being said, still no food, continuous heart burn and rib pain and I had to even take pain meds which I don’t do. I tried heating pads, everything, So the GI Doctor says he wants to order two more invasive tests, So I asked why am I doing another radioactive test on my digest system when the first test was fine and I would have to go off my meds again the only thing allowing me to even eat a little shake, then have a tube down my nose into my stomach to measure the ph balance. Going off my meds again. I thought about it and I decided no more tests, every test makes me worse. So If Stanford can’t go by the past tests then I will attempt the test but I have had enough. I know Dr’s offices make money off of test being done in their offices and I know that’s a huge influence, but, it’s making me worse. I called my ENT and told him I am going to come see him to check in to be compliant but no hearing tests. Going into the little box for the testing causes so much pressure in my head it throws my vertigo beyond and ear pain. Enough is Enough and for each patient that will be different. For me 10 years and it’s enough, I continue my meds but cut some in half for less effects. I won’t tell the Dr’s because then you are non compliant but I am extremely sensitive, so I have to do what is right for me. If your feeling that same feeling, Stand up for yourself, listen to your gut and follow it. Just remember you can always reschedule the test if you change your mind or increase your meds to original prescription, you have to listen to your self.
Service Dogs can being a big plus for those with invisible illnesses. Depending on the illness and what is needed, For instance, A Service dog, can open refrigerator door, cabinet door, retrieve water for the patient, grab snacks, bring a blanket, bring clothes to the patient, shoes, pick up objects off the floor that the patient dropped but most of all some dogs can be trained to detect seizures, drop attacks, fainting spells and worn the patient before it occurs, specially for children to prevent accidents or serious injuries.
The Con is, to find a good trained service dog, could be as high as $17,000 plus training. Local organizations might have people that have donated for others to get the service Dog, so make sure you check or local organizations in your area, they may be able to help with the cost in the dog or the training. Another Con a lot of people with invisible illnesses have allergies, so in picking a service dog, make sure to consider the Allergy factor, Poodles, labradoodles are a fantastic choice because they don’t shed.
Having a Service dog should never be something to be embarrassed about, but can be for some. But from someone who has a invisible illness, I would love a service Dog to help me detect when I am going to have a drop attack, or pick up something off the floor because If I bend over I get so dizzy, nausea, vomiting, ect, to me it would be a blessing, but the for a disabled person on disability, its just not in the funds. But for those who can afford it!!!! What a blessing to that patient. Child or adult.
My symptoms are becoming worse and more often, Although my hearing seems to be stabilizing, sounds the same, but I do have a new symptoms, I have the sensation of my Brain actually moving, it’s kind of scary when it happens because it happens with out warning, its almost like my brain is rotating and I have to sit and automatically have to throw up. I know my brain is not moving so it’s just a sensation but it feels like it. I know if I went to the Dr, they would say let’s do another MRI. I just can’t do any more MRI’s Ct scans, EEG’s, The drop attacks are becoming more frequent, but our weather here has been extremely hot and humid which we normally don’t have so I have to believe this some how can be related. I am looking forward to the weather cooling off, so maybe I can get some relief. Going to the Dr is not a option for me, I am so tired of tests. I can only try as hard as I can to keep my limits, eat every so many hours with protein, drink a lot of water, take my vitamins, meditate and of course medication and let go of the guilt that comes with this disease. Keep journaling, reading when I can. Try to limit stress, keeping toxic people out of my life. I try to swim as much as I can. Its not easy but I don’t want my muscles to weaken, so I push. Eating clean!. doing the best I can and be greatful every day I wake up and have a good day and can help someone else.
Have a great day!!!!
As this year comes to a close, I would like to reflect on this past years events, feelings and New Years resolutions. To begin with the starting of the support group I hope has been such a gift to the members as much as to myself. The support group some days larger some days smaller groups but it seems even if it’s just a few, it was meant to be just the few of us. The biggest gift is the understanding that we all are experiencing different and some of the same symptoms, and we are all feeling alone in this disease. I have also had the gift of getting to know the other side from the spouses on what they go through, which has helped me in my own life. I have also learned the lack of communication between Doctors is our biggest hurdle and lack of public recognition of this disease with family, friends, co workers and the general public. Example: If I share I have a Vestibular dysfunction autoimmune disease, people will say “oh” and continue there own conversation, If I said I had a broken leg, MS or cancer, the response would be completely different. Not because people are rude but because people don’t understand or have never heard of this disease.
This year has been has been extremely difficult for me, My symptoms worsened, I am disabled and yet I am so grateful that I am still mobile and have my family to help me when needed. The biggest change in my health has been the visual changes on a regular basis and my drop attacks ( I fall with out any notification) There is no bracing yourself, or putting your arm up for protection, I just do it, end up where ever I fall, then instantly want to throw up. Then I feel so tired, like I can’t get up, function, takes me a day or so to recover, forget the bruising, knots on the head or sore body, it’s the cognitive and fatigue that is the hardest to recover from, almost feels like getting run over by a truck. But I feel I am still trying to learn my limits and if I push them I pay. But for me, the support group has become my safe place, my place I can be my self, say how I really feel and cry if I need to with out any judgement.
This next year my goal is to increase the group size even just a little, write letters to all the Doctors involved in our care explaining what patients with our illness go through and need from them. I would like to establish a newsletter to send to them on a regular basis, I would like to raise awareness about Vestibular dysfunction as much as a I can. I would also like to continue having some speakers for different aspects of our disease, we know there is no cure, but just to help us understand what’s happening to us. To provide support and education for us. I also want so desperately to make Doctors to understand the depression aspect of our disease.
On a personal level, I have to still adjust to the new me and hope I can accept this person and learn to love this person with out guilt of who I use to be, the guilt of not being able to participate in every function, or do more than I can or even contribute as much as I use to. This is the hardest hurdle for me. So I am looking forward to 2016. I am hoping trying so hard to be happy with me.