I've been having a really rough summer. My pain levels have been worse than usual and my sleep has been almost non-existent. My union rep told me to look into long term disability, but my healthcare provider told me to find another Dr. because she will not help or approve of ANYONE going on long-term disability - and a middle class, 39 year old white male like myself is just too prone to serious depression and risk of suicide if put on long-term disability anyway.
Driving is scary because my prescriptions give me occasional double vision, dizziness and vertigo.
I am really scared of the financial problems that would arise from going on disability. My pay would be cut by one third and my health care premiums would change from $144 a month to $500 a month. Paying my mortgage, car payments, student loans, etc would be impossible on only two thirds of my pay.
A teacher in my corporation just got a DUI for driving on prescription drugs.
I have been keeping my father informed of all this going on via email. Even though he lives about 7 hours away, I haven't seen him almost 10 years. He suddenly called and said he wanted to come visit to check on me. He was worried about me.
He showed up Friday night and stayed until Sunday morning. We went to dinner, barbecued on Saturday and just hung out and had a good time catching up.
I put such a good face on it that when he left he said that he was glad I was alright and that I had a good handle on things. I got the impression that he had expected to see me at death's door when he arrived... When he left, I took my painkillers and crawled to bed. I spent the weekend hiding my pain and doing more than I should have.
Pride is a terrible thing.



Good Day Jeff,I'm not so sure that pride is such a terrible thing,although I can relate to how "we" want to appear okay to our loved ones, I have to ask WHY? it is what it is, and there's a lot to be said for accepting it and movin along within our limitations. I now need to comment on your reply of your dread of "disability" been there , and the STIGMA sucks,but I do believe a lot of that is in our heads, as for the DR. that won't help with disability, I find that truly an offense to all of the chronic pain patients that are TRULY disabled,I'm not pleased w/ my situation,in fact I'm down right pissed off, but I'm a disabled person due to MY pain, no one can fully feel what we're going through,nor can they understand the complexities(there's a gazillion) but learning to cope to the best of our limited capabilities is what I strive for.I must also tell you that there is a definitive test for Fibro called the "tender points" a QUALIFIED Dr. checks 19 specific points on your body, and if 11 or more of those points respond with pain it's then deemed Fibro. As for the finance situation,man oh man do I know about that,I can only tell you that there is always and I mean always a way to deal with things,although we get use to doing things in a certain way and tend to believe that it's the only way. Sorry to have posted such a LONG piece felt compelled,I wish you a low pain day,Starflake
<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:PunctuationKerning /> <w:ValidateAgainstSchemas /> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:Compatibility> <w:BreakWrappedTables /> <w:SnapToGridInCell /> <w:WrapTextWithPunct /> <w:UseAsianBreakRules /> <w:DontGrowAutofit /> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> </w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" LatentStyleCount="156"> </w:LatentStyles> </xml><![endif]--><!-- /* Style Definitions */ p.MsoNormal, li.MsoNormal, div.MsoNormal {mso-style-parent:""; margin:0in; margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:12.0pt; font-family:"Times New Roman"; mso-fareast-font-family:"Times New Roman";} p {mso-margin-top-alt:auto; margin-right:0in; mso-margin-bottom-alt:auto; margin-left:0in; mso-pagination:widow-orphan; font-size:12.0pt; font-family:"Times New Roman"; mso-fareast-font-family:"Times New Roman";} @page Section1 {size:8.5in 11.0in; margin:1.0in 1.25in 1.0in 1.25in; mso-header-margin:.5in; mso-footer-margin:.5in; mso-paper-source:0;} div.Section1 {page:Section1;} -->
<!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} </style> <![endif]-->Hi Starflake, thanks for the response.
It's kinda funny to actually face the fact that the stigma of disability may be greater than my fear of financial ruin... I have a lot of bills and paying child support for my 5 children (yes, all with the same woman) is at the top of my list. I guess it doesn't help that my ex is one of those people that believe if you are not spouting blood, there is nothing wrong with you. We were married 17 years. Her response to my problems varies from outright disbelief to just mocking me... Makes things very tough, especially because she drags the kids into it and guilt trips me. If I end up on long-term disability, my pay drops and her child support will drop. Even though she married her rich boss and spent her summer buying horses, a drop in her support payments will be met with fury.
My VA provider did the tender point test but apparently in the VA medical system, that is not enough for the "official" diagnosis. She did put me on, what I found on the internet to be, the usual meds for fibro: Tramadol (Ultram), Gabapentin, Flexeril, and Vicodin.
I am frustrated with the care I've been getting in the VA system, but the civilian world has been just as bad.
I went to my family doctor and, after telling him what was going with in the VA docs, he said, without any kind of examination, "You don't have fibro. You need stop taking the painkillers and just take an anti-inflammatory." I told him I can't take those anymore because I was prescribed them for so many years my stomach bled. He said he could also prescribe me a pill that would keep the anti-inflammatory from inflaming my stomach... Just can't seem to find the right doc to help me.
And you thought your post was long... Not being able to sleep gives me more time to type I guess =] Sorry I tend to vent and ramble.
May your day be as painless as possible
Jeff
Hello Jeff, Well I've just spent the better portion of my day with my neurologist,and 2 of his YOUNG students,it was an overall very productive and illuminating visit. The Dr.I was with is terribly smart and he listens (although he multi tasks) and the result of his listening is my scheduling a hospital stay to get bupivacaine injections through a catheter line that will be run in and up my back to the designated brachial trouble spot,X-ray tecnology will assist in the proper injection site,scary! I'm so tired of living with this ongoing unrelenting pain in sooo many parts of my body that I'm on a mission to get some things under control if it's within my power,and apparently I have a wonderfully competent crew of Docs,so I'm gonna roll with at least trying to get some things taken care of albeit it may only be a temporary fix,I'll take it. I agree that you should try to find another Dr. and I KNOW how hard that is but once you get the right fit all things seem better,and some times it takes more than 1 Dr. to recognize all of the systems that are out of the norm,and dealing with the V.A. has got to be so screwed, but I plead with you to keep trying and think of yourself and damned the bills,opinions,guilt tripping and all of the other crap that holds you back from being a WELL HUMAN BEING,it's a battle my friend and we can fight! Sincerely Starflake
Jeff,
You definitely have a gift for writing. You put in words in such a descriptive way what we all are feeling-hiding the pain, fears of not being able to provide for ourselves, etc. If you did go on disability there must be ways for you to fill in the gap writing, or other home business ideas. You are definitly gifted at writing. I don't think you were describing pride-you were describing your illness-and not looking ill is just one of the symptoms. It is just not possible to show the bad side of this without appearing whiny and weak. And it still doesn't help, so we just withdraw into ourselves, and at least for me, just avoid people that are critical or don't understand. Good luck-and keep writing!!
Good day to you, I think I received the reply to "pride &pain" by mistake, my e-mail alerted me,but the greeting is to Jeff,my monicker on the chronic pain network is "Starflake" so if somehow I did something that made it appear that my REPLY to Jeff was actually Jeff I apologize,I'm not good at the computer thingy,but I keep working at it anyway, your comment on how we hide our pain is sooo completely acurate and sad especially when we withdraw as to have some place to not have to BE OKAY, be as well as you can, I wish you a low pain day,Starflake
Thanks lorreann, I finally get a chance to put my English degree to work=] I don't teach English anymore, but I do miss the lit and the writing. Looks like I might get the chance to write that novel I always wanted to do.
Been reading Baudelaire again lately - I should probably stay away from that dark stuff, though it suits my recent mood:
... I'm the vampire of my own heart
- One of those utter derelicts
Condemned to eternal laughter,
But who can no longer smile!
from ~ The Man Who Tortures Himself
...Ceaselessly by my side moves the Demon
He swims around me like impalpable air
I swallow and feel it burn my lungs
And fill them with eternal desire and guilt
An alternate translation from ~Destruction
Saw a movie called Immortal. Had several quotes from Baudelaire in it - sometimes I forget how powerful poetry can be when you hear it read aloud.
You are right, it is hard to try to explain to people what you are going through without appearing whiny or weak - at least in my eyes. It doesn't help that I am kind of a big muscular guy. I might break the nose of the next person that tells me I don't "look disabled." I have a disability plate (it's a DAV plate), but am embarrassed to park in the handicap spots unless I am REALLY hurting. I have had people stop and make comments about my parking in a handicapped spot. I don't usually respond well. I've taken to just telling them they don't look like idiots, but...
I've been hiding out at home the last couple days just avoiding everything and everyone instead of enjoying a long weekend. All this stuff has really had me down.
I think I'll go fishing tomorrow. Try to clear my head.
Jeff
Starflake, I am so glad to hear that you had a good dr. visit. I hope the procedure is what you need to get relief. It does sound scary, but it sounds like you have faith in the guys you are seeing and that they are good. Will you be doing this soon? I'll keep my fingers crossed for you!
I've been very down lately with all the stuff going on, but the replies to my last post really made my day.
It is very humbling to read the posts from everyone here. I have not had such serious problems like you and so many of the others. I probably shouldn't feel this way, but I feel like my problems are nothing compared to the others here and the people I see at the VA hospital. My feet, ankles, knees, legs hurt, but at least I have them. There are so many vets that don't. I feel I got off easy compared to so many others. I feel guilty just walking down the halls at the VA hospital. I saw a great sign. It said that, "The price of freedom is evident in these halls."
Thanks for the reply, starflake. And helping me fight.
If someone tells you that you don't look disabled just tell them they don't look like an idiot either. As for the stares about the handicapped plate-I understand since I still circle around the parking lot until someone leaves because I'm too proud to get one. But REALLY! why do we care what "THEY" think. After all, "THEY" don't even think we look sick!! What do "THEY" know.